Behcet's Disease

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Behçet’s Disease

I have a friend who was diagnosed today with Behçet’s disease. It’s rare overall but is rarer here in Canada. After doing some brief online research, this looks like it’s going to be really rough for her (she’s currently admitted in a hospital out of town for testing better than she could receive here). I personally have ME/CFS and POTS, so I know the generic how to help somebody with chronic illness tips, but wondering if anybody here has Behcets or knows somebody with Behcets and can give me some advice on how to support her? Thanks in advance :)
#BehcetsDisease #autoimmune

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Let’s not self-victimize. If we focus on what we CAN’T DO, we forget about all the amazing things our bodies CAN DO! I hope to enact a paradigm shift!


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Struggling to be validated by Drs & feeling SO fed up. Chronic, rare Autoimmune Symptoms; I know it's Behcets. Looking for specialist in CA, US.

Short run down. Chronic strep throat as child. Tonsils removed. Allergic to strain of strep in 6th grade...almost killed me. Never regained "normal" health. On and off horrid joint pain, pain in eyes, multiple Derm diagnoses, chronic inflammation, chronic insomnia, asthma, then Arthritis, Bursitis, Depression, Anxiety, lost weight then gained over & over, pregnancy very painful and high risk. Spinal Stenosis, Sciatica, Anemia. Got pregnant again & was even worse. Thankful for 2 healthy kids, but Momma is not healthy. I'm 47 now. Labeled with Fibromyalgia but no treatment. Need to be back on pain meds but bc I stopped (MY choice), years ago Drs don't want me back on them. I have done so much research and I KNOW I have Behçet's Disease. Looking for somewhere to go in the US for the validation & proper treatment. 20+ years of struggling invisibly (until huge sores all over neck & head in May 2022). Currently on evil Prednisone, Colchicine, Mobic. Rheumatologist taking too long to have me jump through all of her hoops. Any advice appreciated 💜
#BehcetsDisease #MomGuilt #ChronicDepression #chronicinflammation #Insomniac #Anxiety #Arthritis #Divorce #PTSD

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I'm new here!

Hi, my name is lynnebeez. I'm here because I have a number of autoimmune diseases including Addison's Disease and Behcet's Disease and I want to share information and treatment ideas

#MightyTogether #MenkesDisease

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Have you ever met anyone who lives with the same rare disease as you? What was it like?

Living with rare disease can not only feel rare in the sense of statistics, but also in building community and finding someone to share experiences with. Finding others that relate can be hard. Have you ever met someone that shares your same rare condition? If so, what was that like for you?

Would love to hear your experience! Feel free to share in the comments below.

P.S. If you need a resource to help you connect with others with rare disease, you can check out the nonprofit NORD, a great resource for rare disease patients: Home - NORD (National Organization for Rare Disorders)

#RareDisease #ChronicPain #ChronicIllness #GeneticDisorders #MentalHealth #Disability #Migraine #SUNCTHeadache #StiffPersonSyndrome #MedicalZebra #EhlersDanlosSyndrome #Spoonie #MarfanSyndrome #EmptyNoseSyndrome #morgellons #Syringomyelia #Neurosarcoidosis #BehcetsDisease #FunctionalNeurologicalDisorder

Home - NORD (National Organization for Rare Disorders)

NORD, a 501(c)(3) organization, is the leading patient advocacy organization dedicated to improving the lives of individuals and families living with rare diseases.
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