Behcet's Syndrome Society
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57 Years old Female with a lifetime worth of Behçet's Symptoms

I just wanted to say hello & say I feel blessed now to have found this group. I have been alone with this Behçet's since childhood, no support network, homeless, unfathomably abused in every way, shape & form, sold on the streets from infancy to teenagehood by the Woman who carried me for 9 months. I have no family except the 4 wonderful children I was blessed to bring into the world & 3 Grandchildren. I have just in Nov 2017 been diagnosed by a random hospital OBGYN during one of 3 Hospitalizations between Oct & Nov. She & the other Doctors who had been scratching their heads before she came along have concluded that I have had this since birth & been given a lifelong battery of unnecessary medications & wrong diagnoses & treatments for diseases that I never had. I want to learn about every aspect & talk to others about Behçet's. I have my first appointment up in Portland Oregon on Feb 2 with a specialist Cailin Sibley, M.D.. Assistant Professor of Medicine, OHSU Director, OHSU Vasculitis Clinic. I hope she is good because the one I met in Eugene where I live currently, was HORRIBLE. I look forward to hearing from everyone who wishes to be heard. Peace

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Hello, I’m glad you found this community. It’s a nice place to get advice, vent, share experiences, etc. I live in the Portland metro area and my Rhuemy is Dr. Sibley. I’ll send you a private message regarding my experience with Dr Sibley.

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Hi!

Glad you found the group as well! I am in Seattle. You are no longer alone :) we are here to help in any way we can. Keep us posted on your journey.

Hugs

Ash

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Goodluck with the appointment I hope that everything will be sorted and you get more clarity on the disease xx

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I was finally diagnosed at age 57 after a lifetime of symptoms and being misdiagnosed (mainly as a hypochondriac!). Getting my diagnosis and the right meds has been life changing for me. I hope it turns out well for you.

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Hope it goes well for you. Keep strong as you have been. I know how hard life can be.sending you love and hope.

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