My Journey With Behcet’s
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My Journey With Behcet’s

By: Makayla Raso

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My Journey With Behcet’s

Behcet's disease is a rare inflammatory disorder that affects the blood vessels in one's body. The cause of this disorder is thought to be autoimmune with some genetic and environmental factors that may play a role as well. The most common symptoms of this disease include mouth and genital ulcers, eye inflammation, skin lesions, and joint pain. Other symptoms of this disorder include gastrointestinal issues and inflammation of the brain and nervous system. There is no cure for this condition, but it can be managed with treatment.

In my personal case, I ended up mainly experiencing oral ulcers. Eye inflammation, gastrointestinal pain, and joint pain were also prevalent, but were not as big of an issue as the ulcers. Around age 7 I had my first canker sore. I was taken to the pediatrician and was told that canker sores are common in children and usually happen every once in a while. Well if only that would have been the case for me. For the next 12 years I would endure countless "canker sore episodes". These episodes would last anywhere from 1-3 weeks and would be extremely painful. Typically an episode started out with my body feeling like I was coming on with an illness like the common cold. I would be fatigued, my lymph nodes would be swollen, and sometimes I'd even run a fever. Following these symptoms, a canker sore would begin to form in my mouth. It would start as a small pimple sized bump, and would evolve into a giant ulcer. The pain of these ulcers were so unbearable that I was limited on what I could eat, and how much I could even talk. Over the counter pain medication such as Advil or Tylenol didn't help at all. Doctors suggested ointments, cauterization of the sores, ice, coconut oil, and more. I tried everything and nothing even came close to helping me. These episodes ended up becoming more frequent as I got older, so every time this happened it became more and more devastating to my quality of life.

Finally I became more persistent with finding an answer to this issue. I was so desperate not just to help with my pain, but to know why this was happening because I knew this was not just typical canker sores. Finally I asked my primary care physician to refer me to a rheumatologist for this issue. The day of my appointment I walked in and did not have much hope for a diagnosis since every other doctor did not seem to take me seriously. I had already been ordered blood tests before my appointment, so we went over those first. I had tested positive for a genetic marker named HLA-B27, which is associated with certain autoimmune disorders. After my doctor reviewed all of my other blood tests, she asked me about my symptoms. I told her about the severity and frequency of my canker sores, and she asked to see pictures. I had documented my canker sore episodes with photographs in the hope that one day a doctor would look at them. Immediately after seeing those photos she said that they were not typical sores, and that based on my other symptoms of eye inflammation, joint pain, and occasional stomach issues that I had a condition called Behcet's.

With finally having an answer after waiting so many years for one, I was so emotional that I broke down right in front of her. Following that, she explained to me that there is a way they can treat the condition and that my episodes could possibly decrease and be less painful. I have now been on medication for almost a year and my life has improved dramatically. I can't even remember the last time I had a flare up, and I will forever be grateful to modern day medicine for that. I want to share this story for anyone out there with this condition or any other chronic illness that you have yet to find answers for. Don't give up and be persistent with your doctors because this is your body and your quality of life! Never let anyone try and minimize your experience. You are strong. You are brave. You are beautiful.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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