Figuring out the skin I’m in (Part 2)

June 7th, 2013  |  by Veralyn Williams |  Published in Blog, Personal Essays

Ok. Let me warn you: This subject is very confusing! While researching all the terms, medication, and diagnosis that have been thrown my way, I’ve changed my mind about writing this twice. But my hope is this will reach the next person who googles their skin condition, and maybe they wont feel so alone.

After 5 different diagnoses and over 5 months of struggling to figure out why I was getting round, yellow-ish, pustules all over my body… I finally have a REAL answer! What I didn’t tell you in, Figuring out the skin I’m in (Part 1), was I had 3 biopsies all together.

Biopsy #1: A pustular from my left arm was removed for a commonly done, H&E stain biopsy. After week one, an initial look by the lab detected signs it could be scabies. By week two, they were pretty sure it was Subcorneal Pustular Dermatosis (SPD), but my dermatologist, Dr. R, wanted to do another biopsy to be sure.

Biopsy #2: A pustular from my left breast was removed for a repeat H&E stain biopsy. Two weeks later the biopsy confirmed it was SPD, but Dr. R, informed me of IGA Pemphigus (IGA), another skin condition that behaves similarly to SPD, but it’s treated with prednisone, instead of dapsone, the medication I started after the 1st biopsy. The problem with prednisone (and why Dr. R didn’t want to prescribe it, unless I absolutely needed it) is it weakens your immune system, and makes it easier for you to get an infection. And it’s a steroid, so it makes you gain weight. But to detect IGA, a different type of biopsy needed to be done.

Biopsy #3: Skin and tissue beside a pustular was removed for a Direct Immunofluorescence biopsy (DIF). I wont bore you with the details on why this is a less common biopsy and why they needed to examine health tissue, instead of an actual pustule, but that explains why Dr. R didn’t just do a DIF biopsy in the first place.

Today I got the results from the DIF biopsy…

Dr. R walked into to the exam room I was in, and with a BIG smile let me know I did infact have IGA. Now I know you’re probably thinking: “Why is that good news? Didn’t she just say the medicine she will now have to take has worse side effects?” Well at least now I know what I have… forreal forreal! And you know how sometimes FINALLY getting the answer you’ve been waiting for, feels anticlimactic?… this is NOT one of those times. In fact, I’m an extremely motivated to continue searching for answers.

For one thing, I still don’t know how I got this in the first place. According to Dr. R there really isn’t a lot of research on IGA cases, to even point me in an accurate direction. But one thing I do know, autoimmune diseases, which IGA is, runs in my family. So a part of me wants us all to head to a gene sequencing center to map out our DNA, but unfortunately, that’s extremely costly. Instead I am going to start asking questions!

Here’s my to-do list:

1. Ask my parents and my grandma about their medical histories, and their parents’ medical histories. This will be hard because like most cultures, discussing family medical conditions is considered taboo and even rude to bring up. But I should know way more about my family’s medical history then I do. And if there are dots to be connected, we all should know, instead of making the next generation start from scratch if they discover a pustule on their skin years from now.

2. Tell everyone I meet how important it is to be an active participant in figuring out and maintaining your health. I would not have reached this point without being my #1 advocate! And I truly believe asking questions got me better care. Dr. R and her team went out of their way to help me understand every step in this process, and that’s simply because I showed interest.

3. Continue to make ME my priority… in all areas of my life. Like I mentioned in part one, I also have to maintain a gluten free diet, so I now cook most of my own meals, and know what’s in everything I eat. I also go to the gym 5 times a week. And I’ve been making all my follow up appointments regularly. These are all things I swore I didn’t have time for, before I started dealing with this condition. As Planned Parenthood would attest to- I was the queen of rescheduling appointments. But what good am I to anyone, if I’m not healthy?

Hope I’m not forgetting anything… Well there’s also this…

Courtesy of PostSecret

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