WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

PEMPHIGOID | IPPF

Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or

years

IT'S NATURAL

It's no secret among the pemphigus and pemphigoid (P/P) community that treatments to help these rare diseases are not always ideal. It's also common for patients and caregivers to reach out to the IPPF seeking advice on holistic/natural/eastern medicines to treat P/P before the typically used western medicines recommended by physicians.

FIND A DOCTOR

Find a Doctor. The IPPF maintains a map of medical and dental professionals at no cost and without preference to any physician listed herein. The purpose of this map is to provide patients with contact information for medical and/or dental professionals familiar with P/P. This map is HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

PEMPHIGOID | IPPF

Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or

years

IT'S NATURAL

It's no secret among the pemphigus and pemphigoid (P/P) community that treatments to help these rare diseases are not always ideal. It's also common for patients and caregivers to reach out to the IPPF seeking advice on holistic/natural/eastern medicines to treat P/P before the typically used western medicines recommended by physicians.

FIND A DOCTOR

Find a Doctor. The IPPF maintains a map of medical and dental professionals at no cost and without preference to any physician listed herein. The purpose of this map is to provide patients with contact information for medical and/or dental professionals familiar with P/P. This map is HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc

HOMEPAGE | IPPF

The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis. RESOURCES FOR HEALTHCARE PROFESSIONALS Siegel Ma. Intraoral biopsy techniques for direct immunofluorescence studies. Oral Surg Oral Med Oral Pathol 1991; 72:681-684. Daniels TE, Quadra-White C. Direct immunofluorescence in oral mucosal disease: A diagnostic analysis of 130 cases.

PEMPHIGOID | IPPF

Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or

years

SUPPORT GROUPS

Online Discussion Forum. RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues that affect them while living JUNE 2021 VIRTUAL MID-ATLANTIC SUPPORT GROUP Topic: argenx ADDRESS Study for PV Living with pemphigus or pemphigoid is hard enough, but when you feel alone it seems even harder. There's something special about connecting with people who really know what you're going through. You are not alone. This is a free, virtual

meeting. The Google

"COACHES CORNER"

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 ADVOCATING FOR CHANGE: HOME INFUSION THERAPY Advocating for Change: Home Infusion Therapy. On March 2nd, 2016, six of my fellow pemphigus and pemphigoid (P/P) advocates and I visited my Congressional members to ask them to co-sponsor legislation that would make it easier for Medicare patients to have IVIg infusions done at home. IVIg therapy is a treatment that many patients such as HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc

PEMPHIGUS | IPPF

Pemphigus is a group of potentially life-threatening disorders characterized by blisters in mucous membranes and skin. The blistering in pemphigus happens because of an immune response resulting in autoantibodies attacking the “glue” that holds mucous membranes or skin cells together. This process is called “acantholysis” and is

not

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

DISEASE MANAGEMENT

Prophylactic administration of 20mg per day of prednisone prior to dental work has been suggested (o). For oral pemphigus, measures such as soft diets and soft toothbrushes help minimize local trauma. Topical analgesics or anesthetics are useful in alleviating oral pain. Oral hygiene is crucial. Otherwise PV may be complicated by dental

decay

DIAGNOSTICS

Diagnostic Pathway Data. In October 2011, KJT Group was commissioned by the IPPF to conduct an awareness and diagnostic pathways survey. Diagnosed pemphigus and pemphigoid (P/P) patients (N=87) completed a 15-minute online survey. Of patients RESOURCES FOR HEALTHCARE PROFESSIONALS Siegel Ma. Intraoral biopsy techniques for direct immunofluorescence studies. Oral Surg Oral Med Oral Pathol 1991; 72:681-684. Daniels TE, Quadra-White C. Direct immunofluorescence in oral mucosal disease: A diagnostic analysis of 130 cases.

PEMPHIGOID | IPPF

Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or

years

SUPPORT GROUPS

Online Discussion Forum. RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues that affect them while living

"COACHES CORNER"

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc

PEMPHIGUS | IPPF

Pemphigus is a group of potentially life-threatening disorders characterized by blisters in mucous membranes and skin. The blistering in pemphigus happens because of an immune response resulting in autoantibodies attacking the “glue” that holds mucous membranes or skin cells together. This process is called “acantholysis” and is

not

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

DISEASE MANAGEMENT

Prophylactic administration of 20mg per day of prednisone prior to dental work has been suggested (o). For oral pemphigus, measures such as soft diets and soft toothbrushes help minimize local trauma. Topical analgesics or anesthetics are useful in alleviating oral pain. Oral hygiene is crucial. Otherwise PV may be complicated by dental

decay

DIAGNOSTICS

Diagnostic Pathway Data. In October 2011, KJT Group was commissioned by the IPPF to conduct an awareness and diagnostic pathways survey. Diagnosed pemphigus and pemphigoid (P/P) patients (N=87) completed a 15-minute online survey. Of patients RESOURCES FOR HEALTHCARE PROFESSIONALS Siegel Ma. Intraoral biopsy techniques for direct immunofluorescence studies. Oral Surg Oral Med Oral Pathol 1991; 72:681-684. Daniels TE, Quadra-White C. Direct immunofluorescence in oral mucosal disease: A diagnostic analysis of 130 cases.

PEMPHIGOID | IPPF

Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or

years

SUPPORT GROUPS

Online Discussion Forum. RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues that affect them while living

"COACHES CORNER"

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and

SUPPORT GROUPS

Online Discussion Forum. RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues that affect them while living COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania

FIND A DOCTOR

Find a Doctor. The IPPF maintains a map of medical and dental professionals at no cost and without preference to any physician listed herein. The purpose of this map is to provide patients with contact information for medical and/or dental professionals familiar with P/P. This map is HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and

SUPPORT GROUPS

Online Discussion Forum. RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues that affect them while living COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania

FIND A DOCTOR

Find a Doctor. The IPPF maintains a map of medical and dental professionals at no cost and without preference to any physician listed herein. The purpose of this map is to provide patients with contact information for medical and/or dental professionals familiar with P/P. This map is HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc

HOMEPAGE | IPPF

The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone

PEMPHIGUS | IPPF

Pemphigus is a group of potentially life-threatening disorders characterized by blisters in mucous membranes and skin. The blistering in pemphigus happens because of an immune response resulting in autoantibodies attacking the “glue” that holds mucous membranes or skin cells together. This process is called “acantholysis” and is

not

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

DISEASE MANAGEMENT

Prophylactic administration of 20mg per day of prednisone prior to dental work has been suggested (o). For oral pemphigus, measures such as soft diets and soft toothbrushes help minimize local trauma. Topical analgesics or anesthetics are useful in alleviating oral pain. Oral hygiene is crucial. Otherwise PV may be complicated by dental

decay

RESOURCES FOR HEALTHCARE PROFESSIONALS Siegel Ma. Intraoral biopsy techniques for direct immunofluorescence studies. Oral Surg Oral Med Oral Pathol 1991; 72:681-684. Daniels TE, Quadra-White C. Direct immunofluorescence in oral mucosal disease: A diagnostic analysis of 130 cases.

PEMPHIGOID | IPPF

Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or

years

"COACHES CORNER"

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 BERTILIMUMAB GRANTED FAST TRACK DESIGNATION FOR THE Bertilimumab Granted Fast Track Designation for the Treatment of Bullous Pemphigoid. Immune Pharmaceuticals, Inc., a biopharmaceutical company developing novel therapeutic agents for the treatment of immunologic and inflammatory diseases, announced today that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to bertilimumab for the treatment of bullous

IVIG BRANDS

Sucrose has been implicated in the black box warnings for renal dysfunction and acute renal failure. Carimune is the only sucrose-containing brand and should be HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and

SUPPORT GROUPS

Online Discussion Forum. RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues that affect them while living COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania

FIND A DOCTOR

Find a Doctor. The IPPF maintains a map of medical and dental professionals at no cost and without preference to any physician listed herein. The purpose of this map is to provide patients with contact information for medical and/or dental professionals familiar with P/P. This map is HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable.

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and

SUPPORT GROUPS

Online Discussion Forum. RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues that affect them while living COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania

FIND A DOCTOR

Find a Doctor. The IPPF maintains a map of medical and dental professionals at no cost and without preference to any physician listed herein. The purpose of this map is to provide patients with contact information for medical and/or dental professionals familiar with P/P. This map is HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc

HOMEPAGE | IPPF

The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone

PEMPHIGUS | IPPF

Pemphigus is a group of potentially life-threatening disorders characterized by blisters in mucous membranes and skin. The blistering in pemphigus happens because of an immune response resulting in autoantibodies attacking the “glue” that holds mucous membranes or skin cells together. This process is called “acantholysis” and is

not

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

DISEASE MANAGEMENT

Prophylactic administration of 20mg per day of prednisone prior to dental work has been suggested (o). For oral pemphigus, measures such as soft diets and soft toothbrushes help minimize local trauma. Topical analgesics or anesthetics are useful in alleviating oral pain. Oral hygiene is crucial. Otherwise PV may be complicated by dental

decay

RESOURCES FOR HEALTHCARE PROFESSIONALS Siegel Ma. Intraoral biopsy techniques for direct immunofluorescence studies. Oral Surg Oral Med Oral Pathol 1991; 72:681-684. Daniels TE, Quadra-White C. Direct immunofluorescence in oral mucosal disease: A diagnostic analysis of 130 cases.

PEMPHIGOID | IPPF

Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or

years

"COACHES CORNER"

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 BERTILIMUMAB GRANTED FAST TRACK DESIGNATION FOR THE Bertilimumab Granted Fast Track Designation for the Treatment of Bullous Pemphigoid. Immune Pharmaceuticals, Inc., a biopharmaceutical company developing novel therapeutic agents for the treatment of immunologic and inflammatory diseases, announced today that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation to bertilimumab for the treatment of bullous

IVIG BRANDS

Sucrose has been implicated in the black box warnings for renal dysfunction and acute renal failure. Carimune is the only sucrose-containing brand and should be HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable. INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298

"COACHES CORNER"

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania

FIND A DOCTOR

Find a Doctor. The IPPF maintains a map of medical and dental professionals at no cost and without preference to any physician listed herein. The purpose of this map is to provide patients with contact information for medical and/or dental professionals familiar with P/P. This map is HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc HOMEPAGE | IPPFWHAT ARE PEMPHIGUS AND PEMPHIGOIDPATIENTSHEALTHCARE PROFESSIONALSABOUT USGET INVOLVED The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

ABOUT US | IPPF

IPPF Overview. The International Pemphigus & Pemphigoid Foundation’s most important objectives are to provide patients and doctors worldwide with information about pemphigus and pemphigoid, and to provide patients and their caregivers much needed comfort and support so they can continue to live active, productive lives. SELF-CARE: COMFORT TECHNIQUES AND DRESSINGS Pemphigus and pemphigoid (P/P) patients may agree that in the early months of their condition it is a very painful and difficult time. However, the following suggestions may be helpful like learning how to care for our skin in terms of taking and applying topical medications, cleansers, moisturizers, dressings, and staying comfortable. INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED Vaccination Information Related to Autoimmune Bullous Diseases. The following information in this section originated from recommendations made by the European Reference Networks for Rare and Undiagnosed Skin Disorders (ERN-Skin) found here.This information has been reviewed and edited by the IPPF Medical Advisory Council to reflect the specific needs of pemphigus and

NUTRITION | IPPF

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298

"COACHES CORNER"

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 COVID-19 AND DECEMBER 9, 2020 PEMPHIGUS AND PEMPHIGOID COVID-19 and Pemphigus and Pemphigoid Mary Tomayko, MD, PhD, Yale University Emanual Maverakis, MD, UC-Davis Aimee Payne, MD, PhD, University of Pennsylvania

FIND A DOCTOR

Find a Doctor. The IPPF maintains a map of medical and dental professionals at no cost and without preference to any physician listed herein. The purpose of this map is to provide patients with contact information for medical and/or dental professionals familiar with P/P. This map is HANDLING PREDNISONE'S SIDE EFFECTS NATURALLY Prednisone (prednisolone) is one of the most successfully and one of the most commonly used drug for treating a variety of diseases, but it can have many side effects. Some of the effects of long-term steroid use on our health are: weight gain, increased appetite, loss of muscle mass and bone density, increased fatty deposits, reduction in zinc

PEMPHIGUS | IPPF

Pemphigus is a group of potentially life-threatening disorders characterized by blisters in mucous membranes and skin. The blistering in pemphigus happens because of an immune response resulting in autoantibodies attacking the “glue” that holds mucous membranes or skin cells together. This process is called “acantholysis” and is

not

WHAT ARE PEMPHIGUS AND PEMPHIGOID? Pemphigus and pemphigoid are chronic illnesses that, with rare exception, do not improve without active treatment. Treatment approaches include a control phase and then a maintenance phase, with the possibility of complete remission or disease relapse (flare). Pemphigus and pemphigoid patients are normal, everyday people and can

live normal

TREATMENTS | IPPF

The IPPF does not endorse any drugs, treatments, or products. Information is provided for informational purposes only. Because the symptoms and severity of pemphigus and pemphigoid vary among individuals, we recommend all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment, and

care.

DIAGNOSIS | IPPF

Diagnosis | IPPF. Diagnosis. Early diagnosis may permit successful treatment with only low levels of medication. Consult a dermatologist or oral medicine specialist if there are any persistent skin or mouth lesions. Because they are so rare, pemphigus and pemphigoid are often the last disease considered during diagnosis.

DISEASE MANAGEMENT

Prophylactic administration of 20mg per day of prednisone prior to dental work has been suggested (o). For oral pemphigus, measures such as soft diets and soft toothbrushes help minimize local trauma. Topical analgesics or anesthetics are useful in alleviating oral pain. Oral hygiene is crucial. Otherwise PV may be complicated by dental

decay

PEMPHIGOID | IPPF

Pemphigoid is a group of subepidermal, blistering autoimmune diseases that primarily affect the skin, especially the lower abdomen, groin, and flexor surfaces of the extremities. Here, autoantibodies (anti-BPA-2 and anti-BPA-1) are directed against the basal layer of the epidermis and mucosa. The condition tends to persist for months or

years

IT'S NATURAL

It's no secret among the pemphigus and pemphigoid (P/P) community that treatments to help these rare diseases are not always ideal. It's also common for patients and caregivers to reach out to the IPPF seeking advice on holistic/natural/eastern medicines to treat P/P before the typically used western medicines recommended by physicians.

SUPPORT GROUPS

Online Discussion Forum. RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.RareConnect partners with the world’s leading rare disease patient groups to offer global online communities allowing people to connect around issues that affect them while living

"COACHES CORNER"

International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 PATIENT EDUCATION WEBINAR International Pemphigus & Pemphigoid Foundation 915 Highland Pointe Dr, Ste 250 Roseville, CA 95678 United States of America info@pemphigus.org (855) 473-6744 – (916) 922-1298 Skip to main content Enable accessibility for

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WE’RE HERE TO SUPPORT PATIENTS AND CAREGIVERS Our mission is to improve the quality of life for all those affected by pemphigus and pemphigoid through early diagnosis and support

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Looking for a doctor who knows how to treat pemphigus or pemphigoid? Find qualified medical and dental professionals in your area. Search our map and filter by specialty.

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ASK A COACH

The IPPF’s Peer Health Coaches (PHC) are pemphigus and pemphigoid patients who help more than 1,200 patients and caregivers each year. These specially trained PHCs reduce patient anxiety and uncertainty while providing unbiased disease and treatment knowledge. You can find our PHCs engaging the community through social media, emails, phone calls, and in-person support. The goal of our PHC program is to ensure we help every person who needs assistance in the shortest amount of

time possible.

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CLINICAL TRIALS AND RESEARCH

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CLINICAL TRIALS

Find out about current clinical trials related to P/P and how to determine if they’re right for you.y NORD and the US FDA, the IPPF

Natural History…

Clinical Trial Information for Patients Natural History Study NATURAL HISTORY STUDY Sponsored by NORD and the US FDA, the IPPF Natural History Study collects patient data for analysis in research studies.The more data we can collect, the better the information we can give to researchers. This leads to better treatments, earlier diagnosis, and one day – A

CURE!

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Elevating Awareness of the Pressing Needs of the Pemphigus Community

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SCIENTIFIC SYMPOSIA

The IPPF hosts periodic international symposia to bring together pemphigus and pemphigoid patients, clinicians, researchers, and industry partners to focus on ongoing or future clinical trials and their underlying science.

2021 Symposium

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ADVOCACY AND AWARENESS

12,474

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8,727

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advocacy support letter sign-ons that will help provide better access to healthcare for our community

ADVOCACY

The IPPF develops relationships with congressional representatives and other support organizations in order to advocate for favorable state and federal legislation, research funding, and policies or regulations that benefit our community at large. Learn more about advocacy

AWARENESS

Our Awareness Program seeks to accelerate diagnosis times by conducting outreach to the dental and medical communities. We focus on the importance of obtaining a correct biopsy for undiagnosed patients, which is the first step toward improving patient quality of life.

Biopsies Save Lives

TELL US YOUR STORY!

My symptoms started at the beginning of April 2018. My mouth was inflamed, and I had painful blisters on both sides that made it very difficult to eat or drink. I had no idea what was causing my symptoms, and… read more Halima

Patient

My journey with pemphigus foliaceus (PF) began in 2009; however, my symptoms began in 2008. I have been in remission since 2016. It has been a long journey, and I have encountered many bumps and detours along the way. I… read more

Rudy Patient

I’ve been a peer health coach (PHC) with the IPPF since 2012. However, if you had told me back in early 2001 that this is what I would be doing today, I never would have believed you. I had never…

read more Mei Ling

Patient

When applying to dental school, my initial feelings about dentistry centered on a yearning to help others. Our prerequisite courses required us to be involved within the community and provide for those in need of dental care. This helped open… read more

Minatallah Patient

My journey began in August, 2017. I had a slight rash on my lower back that was extremely itchy. When I went to see my primary care doctor for my annual physical, I mentioned the rash, but he never looked… read more Linda

Patient

When I was first diagnosed with pemphigus vulgaris (PV), I didn’t have the slightest clue what those strange words meant or how this disease would impact my life. The physician who finally diagnosed me handed me a description of the… read more

Kathleena Patient

It was January 2007, and I was sitting across the desk from the second dermatologist I had seen in five months. For the second time, I was told that my condition was probably “seborrheic something-or-other” and was prescribed an alcohol-based… read more

Fred Patient

When I was diagnosed with pemphigus vulgaris (PV) in late 2010, like most patients I’d never heard of the disease. Also, like most, I’d endured about six months of worsening symptoms before finding a doctor who was able to help… read more

Toby Patient

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UPCOMING EVENTS

Monday, June 7, 2021 8:00am (PDT) SCIENTIFIC SEMINAR WEBINAR SERIES Topic: Scientific Seminar Series: 1

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Wednesday, June 9, 2021 1:00pm (PDT) PATIENT EDUCATION WEBINAR Topic: Rare Disease Week Advocacy

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Sunday, June 13, 2021 12:00pm (PDT) ROCKY MOUNTAIN CO VIRTUAL SUPPORT GROUP

Topic: June Meeting

This is a virtual meeting and the Zoom and phone call information will be sent upon registration.

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See all upcoming events

PEMPRESS

Wednesday, April 28, 2021 NOMACOPAN RECEIVES FDA FAST TRACK DESIGNATION FOR BULLOUS PEMPHIGOID

Posted by Anna Lane

On April 23, 2019, Akari Therapeutics, Plc (Nasdaq: AKTX), a biopharmaceutical company focused on innovative therapeutics to treat

orphan…

Read more

Tuesday, April 20, 2021 PUBLIC STATEMENT: MEDICAID AND CHIP PAYMENT AND ACCESS COMMISSION

(MACPAC)

Posted by Marc Yale

On April 8, 2021, IPPF Advocacy & Research Coordinator, Marc Yale, issued a statement during the Medicaid and CHIP…

Read more

Tuesday, April 13, 2021 FDA LISTENING SESSION ON PEMPHIGUS AND PEMPHIGOID Posted by Patrick Dunn On February 8, 2021, the US Food and Drug Administration (FDA) held a Listening Session with patients representing the…

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Monday, April 5, 2021 COVID-19 PANDEMIC AND AUTOIMMUNE BULLOUS DISEASES

Posted by Anna Lane

The results of our survey are published in ​​​the Journal of The European Academy of Dermatology and Venereology: COVID-19…

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Thursday, March 25, 2021 STATEMENT REGARDING ANTI-ASIAN RACISM AND HEALTHCARE INEQUITIES Posted by Patrick Dunn March 25, 2021One of the most important functions of the IPPF is to distill scientific language related to rare…

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Friday, March 19, 2021 NORD STATEMENT ABOUT THE AMERICAN RESCUE PLAN

Posted by Anna Lane

The National Organization for Rare Disorders (NORD) Rare Action Network released a statement about how the American Rescue Plan…

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Tuesday, March 16, 2021 THE URGENT NEEDS OF PEMPHIGUS PATIENTS: ELEVATING AWARENESS

Posted by Anna Lane

The IPPF has published a white paper focusing on the urgent needs of

pemphigus patients.

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Wednesday, March 10, 2021 INFORMATION FOR PEMPHIGUS AND PEMPHIGOID PATIENTS RELATED TO COVID-19 Posted by Patrick Dunn IPPF Medical Advisory Council Statement: COVID-19 Vaccination Based on the current information that is available, the IPPF Medical

Advisory…

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Friday, February 19, 2021 RARE DISEASE DAY AND RARE ACROSS AMERICA: 2021

Posted by Anna Lane

We are rare, we are many, we are strong, we are proud! The purpose of Rare Disease Day® is…

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Tuesday, January 12, 2021 PATIENT-INITIATED DERMATOLOGY RESEARCH NEEDS PEMPHIGUS AND PEMPHIGOID

PARTICIPANTS

Posted by Anna Lane

The International Alliance of Dermatology Patient Organizations (also known as GlobalSkin) is inviting pemphigus and pemphigoid patients to

participate…

Read more

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