Story about Behcet Syndrome , Autism.

How I got here

Jun 6, 2016

By: Laura


I have had mouth ulcers since earliest memory. They were bad enough that it impacted my growth as a child. Braces made them even worse. As I grew up, new symptoms started: bilateral hip bursitis and stomach ulcers before I finished high school, and on from there, with enough symptoms to classify by the clinical trial criteria at age 23, smack in the middle of pharmacy school. 

When I got pregnant with my son at age 35, I knew I was pregnant days before the hospital blood test could detect the pregnancy, because my Behcet's got much worse. (A study by Joanne Zeiss indicates that in the US, you have about a 50/50 change of getting better or getting worse during pregnancy). I stayed in a flare ever since my pregnancy with my son who is now 10 years old, but he was totally worth it. He is healthy, though he was born with oral ulcers because of passive immunity. Babies are born with a boost from their mom's immune system to protect them against infection, but in our case, it made for a rough first few weeks for him. He's been healthy ever since and has no signs of Behcet's. 

I've experienced every manifestation of Behcet's expect eye involvement. I've been on (and failed) colchicine, pentoxyphilline, azathioprine, Dapsone, Cellcept, Otezla, Enbrel, Remicade, Anakinra, Cimzia, many years of prednisone, and more. I have never tried any Thalidomide analogues, cyclosporine, or Cytoxan. I am currently doing fairly well with methotrexate, Humira, and Plaquenil. I am well-managed by a team of rheumatologists, a pain specialist, and a PCP who doesn't mind being a team player. 

There are days that I stay home and rest, and there are days that I live at full throttle.I have a BA in biochemistry, a PharmD, and am working on my MPH. I have a loving family of my own. I am living proof that though it takes work and plenty of help, you can live a good life with Behcet's. 

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1 comment
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My brother (RIP) was diagnosed first. Several years late, I was too, by him to a room full of Dr's. I appreciate all you are doing to help bring about awareness. Blessings to you

Commented 7 years ago Amy 110

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