Tag Archives: pemphigoid

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.

It can be difficult to accept the news of a lifelong chronic disease. It may be easier to understand the diagnosis of appendicitis when a procedure is needed, or medication to treat a cold, or the need to use crutches for a couple of months because of a broken bone. But accepting a disease like asthma, diabetes, lupus, pemphigus, or pemphigoid may be more difficult. Managing your life first begins with a strategy to live with your medical condition.

Even if you don’t have a medical condition, it’s always wise to have your medical information accessible ICE (In Case of Emergency). It’s a good idea to wear a medical alert bracelet or carry a medical ID with you, but since many people carry a cellphone at all times, it’s a great idea to use or install a health app.

Now that you know what you have been diagnosed with, it is important that all of the doctors who treat you are aware of pemphigus and pemphigoid (P/P), too.

This includes pemphigus vulgaris, bullous pemphigoid, mucous membrane pemphigoid (aka ocular cicatricial pemphigoid), pemphigus foliaceus, pemphigus vegetans, IgA pemphigus, paraneoplastic pemphigus, or gestational pemphigoid.  

All P/P rare autoimmune diseases are skin-blistering conditions. Steroid medication is often recommended in conjunction with immunosuppressant therapy in order to lower steroid dosages and bring the patient to remission (or at the very least, on a low-dosage maintenance program).

Since this is a condition that affects the skin, any invasive surgery will require an adjustment to medications prior to and after the procedure. This includes dental work (i.e. tooth extraction). Definitely for knee replacements, hip replacements, and any other invasive procedure.

Therefore, it is very important to advise your primary care physician, dentist, internist, rheumatologist, ob-gyn, and any other medical professional you are seeing on a regular basis. Each doctor needs to know about your new diagnosis and the medications you are taking, including any adjustments throughout your treatments, so they can keep track as well.

Your entire medical team is working together to keep you healthy, and keeping all of them in the loop is to your advantage.

Photo of Rebecca Oling and Dr. Cataldo Leone

It wasn’t easy getting to this meeting. After a four-hour train ride, I decided to walk to my hotel, nearly two miles away. It was rush hour, days after a major snowstorm. Boston was cold, and the streets were crowded with traffic barely visible beyond mounds of blackened snow. The walk was neither refreshing nor picturesque; it ended with a gauntlet of addicts outside the methadone clinic near my hotel. No sooner did I arrive in my hotel room when the phone rang. He was early, and I was spent. Everyone has a story.

The International Pemphigus and Pemphigoid Foundation (IPPF) is pleased to announce the availability of a seed grant program to encourage and support patient-oriented research of pemphigus and pemphigoid. The intent of these grants is to support well-defined research projects that have a specified benefit for improving the treatment, health, disease management, or diagnosis of persons with pemphigus and pemphigoid. Consideration will also be given to studies that contribute to the body of medical knowledge of pemphigus and pemphigoid.

Rare Disease Day is a day of unity for us patients with rare diseases. I can’t speak for you, but I felt very alone and isolated when I found out I had pemphigus vulgaris. Then I found community in the IPPF. It was very comforting to know there were others out there who had gone through what I was living through. Now imagine being with hundreds of others who have a variety of rare diseases.

The 2016 Patient Conference has already come and gone. It was an amazing experience for attendees and presenters alike. This year’s event focused on the importance of peer support and expert research, and there was a special emphasis on oral care. The conference was full of learning, laughs, and the formation of life-changing bonds.