I thought I would write a quick blog about my experience. I am currently 38 years old. I had a full head of hair for 37 years. I lost my older brother three years ago and was severely depressed as he was my best friend. Shortly after I noticed my beard was thinning out then about a year later I had a bald spot on the back of my head that my barber noticed. Very quickly I progressed to universalis. Needless to say I was shocked at losing my hair and how fast it progressed. I work as an orthopaedic surgery resident and will be applying for fellowship then a job as a practicing surgeon soon. As everyone knows this kills your confidence and I hope it comes back with a little more time. I was rather cocky before my hair loss. I was in the Marine Corps out of high school then did really well in undergrad, medical school and residency. This disease just makes you feel like crap. I'm taking cyclosporine and Otezla which makes my stomach constantly feel gross. I grew most of my hair back for a short while now I have about half of it. My dermatologist is trying to get my on a JAK kinase inhibitor but I guess its not that easy and I work for the hospital. My stupid nose is always surprise runny as well. Oh well, I hope this thing gets cured one day because I would like my hair back. Sorry for the rant. I feel your pain everybody.

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Comment by Baldie on December 20, 2017 at 3:25am

As a resident with a greater understanding of the human body than the typical alopecia sufferer, what is the time horizon youre expecting with the JAK inhibitor?  Would you stay on it for years if that's what it took to maintain a durable head of hair (and eyebrows, etc)?  I'm considering the same thing.  I'd jump on Xeljanz in a second if I knew it were a two month cycle or something similar.  But the thought of having a seriously compromised immune system for years is just scary.  Higher infection risk.  Higher cancer risk.  A bunch of other side effects, plus the unknown.  How did you weigh out the pros and cons?

Comment by april on December 23, 2017 at 10:53pm

Everyone has to choose whatever treatment or therapy they feel may help them. I am a Respiratory Therapist in the hospital. I have had Universalis for 6 years now. For me, experimental therapy with side affects are just not worth it. I have become extremely comfortable being a bald woman. I am healthy and see so many people on a daily basis that have life threatening diseases that are heartbreaking. Every person's journey is different. I would love to see more awareness for our disease and maybe someday there will be treatment without so many adverse effects. Just treated myself to the most amazing eyebrow tatoos ever!!


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