pemphigus vulgaris

A Rare Disease That Sounds Like It Belongs in Harry Potter

It started last year (2017), when I was extremely fatigued for months and couldn’t shake the exhaustion. I slept at night as usual, but had a hard time getting up in the morning. The exhaustion, pain and swelling were always present, and no matter what I tried, the discomfort would not subside.

I went to my primary doctor, who sloughed off my symptoms as being tied to inflammation associated with Fibromyalgia. By December, my gums were very inflamed and my tongue was burning. I went to my primary and again was told that it was from the Fibromyalgia. This time, the doctor gave me thyroid medication for a thyroid condition I didn’t have.

Between January and February, my tongue burning came and went and I had canker sores — or so I thought. The canker sores never fully disappeared. I tried to solve the issues using acupuncture, Chinese herbs and vitamin drips. Unfortunately, the natural route was not working.

Three different doctors misdiagnosed me again and I spent a lot of time and money on medications I never needed. I went to six different doctors, whom said they didn’t have a clue what I had. With no help or guidance, they gave me #Prednisone and sent me on my way. I even had a follow-up with my primary who never showed up to the office. I changed my primary doctor.

Dr. Google

At that point, I was overly frustrated. I started researching “mucous membranes blisters” and luckily information showed about Pemphigus Vulgaris and The International Pemphigus & Pemphigoid Foundation.

“” is used in a very specific way to describe blistering disorders caused by autoantibodies against some part of the epidermis, which lead to disruption of the intercellular junctions (and hence bullae). vulgaris, not surprisingly, is the most common type of pemphigus (“vulgar-” comes from the Latin vulgaris, meaning the general public). It occurs primarily in adults between the ages of 30 and 60, and is characterized by big, flaccid bullae that burst easily (in most patients, you’ll see more ruptured, scab-covered bullae than intact ones).

Communication and Trust

Suddenly, I realized #Pemphigus Vulgaris was likely the source of my symptoms. If I hadn’t found this information or site, I don’t know where I would be right now, since none of the other specialists knew where to send me or even bothered with helpful suggestions. I brought the information I received from the executive director of the Organization — Mark Yale — to a dermatologist. I wanted to ask for the biopsy to be done. The biopsy is a immunofluorescent of the blisters. “ is estimated to affect anywhere from 0.7–5 people per 1,000,000 per year in the general population.”