patient stories

Some Men Suffer Silently

[Will on the far right]

I had never heard of psoriasis previous to my diagnosis.

I had no indication of the coming onset of my autoimmune disease. However, my mother is diagnosed with mild Crohn’s Disease, and I had digestion issues as a child, so there was concern as to this being an issue. My grandfather also has mild psoriasis that I was unaware of until my diagnosis.

–How has your life been changed? –
Psoriasis has influenced my life in a negative way consistently since my diagnosis, with varying degrees of challenge related to severity of flare ups. Streptococcal infections cause massive flares of my psoriasis, and during periods of these flares my self-confidence, social life, academic life and physical fitness are depressed. The hindrance due to stigma caused by red lesions is in part a cause of this, as well as the consistent routine care of my skin that is necessary during these times. I have experienced the burden of using a biologic medication, which has helped my condition, but hindered my life in other ways due to dependence on it. 

–What is college life like with an autoimmune disease? –
Challenges came with figuring out the best way to deal with the symptoms that it presents as a full time student living in a new area with limited knowledge of how healthcare systems work. I have not had a consistent dermatologist as my family’s healthcare has changed several times over the last 3 years, but I wish that my doctors had been more aware/informed about the onset of psoriasis due to streptococcal infections (and how this specific psoriasis may differ from others).

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The social aspect in college is huge, as I often opt out of activities when I don’t want to expose my skin, or drink alcohol as it exacerbates my symptoms. It also sucks living in hot LA and walking around campus when I sometimes have to wear long sleeves/pants for several months, along with the degree of uncomfortable itchiness the rash provides. In addition, I often experience that strangers assume I have a contagious, communicable disease. All this includes the constant, daily care required to apply creams/ointments is difficult to balance with physical exercise and hygienic practices.

My autoimmune disease is ironically very visible (in contrast to most autoimmune diseases), but I do wish people understood the level of care and attention it requires to live with psoriasis. I am grateful that my symptoms do not provide any extreme limitation to my lifestyle. But because psoriasis is a skin condition, even as severe as mine,

people tend to think that because it poses no life-threatening risk, it is less of a challenge for me to face. However, it has significantly altered my life and goals.

-Will

update:
I recently had a tonsillectomy so that I can avoid getting strep infections, and I also have hope that it may help clear some of my chronic psoriasis. There are several studies that indicate this can be a valid treatment for individuals who experience psoriasis onset similar to mine, but it is not validated through studies as a legitimate clinical treatment.

 


Will is currently a UCLA college student living with Psoriasis. In the prime of his life, and in the middle of gaining the education to start his life, he is bogged down with healthcare administrative issues, constant care for his condition, and must be aware of every single thing he does from food to clothes. He went from youth to adult with all his responsibilities surrounding his disease. In a nutshell, Will’s autoimmune disease has prevented him from living a normal college life.

With increasing autoimmune disease incidences in all 20-something year olds, it is time we collaborate to find ways to prevent and slow down these rates. Years of quality life are being sacrificed at the hands of autoimmunity.

Still think autoimmunity should remain “invisible?

 

We are looking for Autoimmunity stories for an upcoming workshop at Stanford Medicine X. If you would like to lend us your voice, send us an email! DrBonnie360@gmail.com

Edited By: Tiffany Simms

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