Where do we go from here?

[Vandross]

My daughter, Tanya, is a 46yo, single, Black Woman with no children. She is a Licensed Professional Counselor in Mental Health. She has been struggling with health issues since high school. I always believed everything had to be related but until now the doctors kept saying there wasn't enough evidence for specific autoimmune conditions. She called me this morning with the revelation of Bechet's which covers every symptom she has or has had including ibs, uveitis, skin issues, psoriasis, general malaise, bi-polar symptoms and pmdd symptoms. Thankfully, she has always had a strong spiritual life and health insurance to fight through the hundreds of flare-ups throughout her life! She has seemed like a hypochondriac to others but I am witnessing her true suffering all along the way. We have been down the road to Johns Hopkins in Baltimore and up the road to Wills Eye in Philadelphia and over the road to Rheumatologists, Dermatologists, Gastroenterologists, Gynecologists, etc. Although it's somewhat of a relief to discover Bechet's Syndrome, it's also disconcerting that there's no test specifically for it. However, to know there is a community of support is hopeful.

[012703060610]

I was suspected to have Behcet's with my oral sores years before diagnosis. She has to have those to have Behcets and Docs always want a biopsy. Getting a biopsy in the mouth is difficult. I don't wish this disease on anyone. I'm happy to answer any questions. I was diagnosed at NYU where they have a Behcet's center-FYI.

[Icefire]

I feel for you and your daughter. What a relief to have a name for the symptoms and someone to confirm what your going through is real. I recommend looking at blood sugar balance. Bechets patients are more likely to become diabetic regardless of weight. I think my sweet tooth as a teenager got me into this mess!!

I used a continous blood sugar monitor earlier in the year. Having tweaked diet, I would say I'm in remission with only the odd mild symptom to keep me on track. The more my blood sugar spikes I have the worse I feel. Have a look at 'Glucose goddess and Zoe project podcast.They give a lot of information for free.

I eventually forked out the money for ZOE and found it to be life changing. Fussy head gone, joint pain gone, erythema nodosum gone except from the odd tiny spot. Ulcers gone to. Obviously remission not cured. I generally feel happier and more energetic.

I've also been exercising alot more and making an effort to move where I can. Starting small so as not to trigger a flair.

Good luck, I hope this helps. 🙏