For the last several months I have been training to run the 2017 Chicago Marathon in October. I decided to commit myself to running 26.2 miles to raise money for the National Psoriasis Foundation. As some of you may be aware, psoriasis has had a significant impact on the last 12 years of my life. I hope to raise money to help those individuals living with psoriasis get the help they need to overcome their struggle.
Psoriasis is an autoimmune deficiency that causes red blotchy patches of irritated skin. During the first 19 years of my life, I never knew anything about psoriasis. Although it is hereditary, no one in my family showed any signs of having it. As a genetic autoimmune deficiency, there is no cure for psoriasis, only medication that temporarily relieves symptoms.
I was first diagnosed the summer after my freshman year of college. The red blotchy scales descended upon my body almost overnight. After the first area appeared on my elbow, the red scales spread at an alarming and prodigious rate to the rest of my body. To illustrate the extent of how bad I had it, a rule used by dermatologists is helpful. They say that the palm of your hand represents 1% of the entire surface area of the skin on your body. At the time I was diagnosed, I was told by multiple dermatologists that I had coverage on over 90% of my body.
My arms, legs, scalp, back, and chest were fully covered in blotchy scales. These blotches caused significant physical discomfort. In addition to causing a sunburn like itching, the scales constantly caused my skin to shed. My bedsheets and clothes were constantly covered in dead dry skin that had peeled off while I went about my day. The skin on my back became so dry that it would crack and bleed all over my shirts whenever I bent over or turned my shoulders.
I was initially given topical creams to apply to the affected areas. These creams were usually made from a vile substance known as coal tar. This substance is a byproduct created when coal is burned. Coal tar smells like motor oil and stains everything that it touches. I had to apply this to my skin multiple times per day. It ruined all of my clothes and discouraged me from going anywhere for fear of staining other people’s couches, chairs, or cars.
As is the case with most sufferers, you generally avoid socializing due to the fear of being judged and, far worse, being forced to answer questions about it. This is not to mention the comments from ill-informed yet well-intentioned people who claim that they know how to treat it. I would be a very wealthy man if I had a dime for all the homemade cures suggested by everyone who ever had an uncle, cousin, or friend that got rid of their psoriasis using some zany homemade method. When you are attempting to manage a disease that is variable to each person, you eventually begin to perceive these quick solutions as trivializing to a very difficult problem.
The impact of psoriasis stretches far deeper than just the surface of your skin. It can impact the activities that you do and the people with whom you surround yourself. You try to hide your psoriasis by wearing long sleeve shirts and pants. You fear that you will shed skin and gross out all your friends. You begin to isolate yourself to avoid these problems. The height of my condition occurred during my sophomore year of college. During this time, I skipped the lion’s share of my classes because I was staying up all night avoiding interacting with the world. These habits lead to a state of depression and helplessness, which, if uncorrected, can ruin your life.
I was very fortunate to overcome my major outbreak with the help of UVB phototherapy at my dermatologist’s office. The summer after I had my outbreak, I interned for my local Congressman in Washington, D.C. At a lobbying event, hosted by the National Psoriasis Foundation, I met some of their executives and their spokeswomen, America’s Next Top Model Winner CariDee English. While discussing my story, they gave me a business card and told me to email them if I would be interested in attending their annual conference in Las Vegas.
When I contacted them, the National Psoriasis Foundation offered to pay for my flight and all costs of attending their national conference. This gesture is something that I have never forgotten as it granted me an important opportunity to meet others living with this disease. This trip came at a time when I needed it the most. Sharing my experience with others that were similarly situated gave me the strength to overcome many of the obstacles that I had been foolishly avoiding. I have never forgotten these people and their experiences remain a motivation to me to this day.
While I haven't had an outbreak as severe as I did in college, I remain symptomatic. Psoriasis constantly moves from different regions of my body, seemingly rotating according to its own schedule. Managing my symptoms is something that still takes up a lot of my time and effort daily. I am not hopeful for an outright cure to this disease. I believe that psoriasis is related to other inflammatory diseases and that the more we learn about all of these, the better off we will be. I am confident that additional research will yield a breakthrough that will prolong and improve the lives of those suffering from a multitude of different diseases, not just psoriasis.
The National Psoriasis Foundation does a terrific job of providing relief to individuals, whether that be in the form of subsidizing medication for families in need, financing research efforts toward a cure, lobbying state and local governments for grant money, or directly assisting individuals with the costly co-pays for medication.
I am over halfway to my goal of raising $1,000. Any donation, no matter how small, is sincerely appreciated. Thank you so much for your support of this project and for your time reading my story.
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