Tag Archives: pemphigoid

As a NORD IAMRARE™ Registry Partner, the IPPF is proud to share that a new book, “The Power of Patients: Informing Our Understanding of Rare Diseases” was published today by the National Organization for Rare Disorders, Inc. (NORD) and Trio Health.

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.