Behcet's Syndrome Society
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Confused

I am sitting here reading posts and replies please can you help me. What is AS or CFS, TNF inhibitors and spondyloarthropthy?  My youngest was diagnosed last year with BD she is struggling at the mo and if I can gain some knowledge I feel I will be able to support her more you guys seem to know what you,'re talking about rather than me just searching internet thanks 

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AS Ankylosing spondylitis 

CFS chronic fatigue syndrome 

TNF tumour necrosis factors. Anti TBFs  are biological drugs to modify immune system. 

Spondyloarthropathy is any disease if the spinal column.   

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Oops. Didn't mean to post at that point. Research and research til u r blue in the face. You will learn so much and become the expert on her BD. sorry to hear you are having difficulty but keep asking questions. Good luck. 

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When I was diagnosed with BD, I had many questions (and still have many questions).  I read up as much as I could.  The more I read, the more I got terrified of the seemingly endless possibilities that could go with BD.   

The best that I could do is share with you what my doctor said.  He said:  Your BD is your BD.    Someone else's BD could be very different from yours.   We need to focus on your symptoms.

I know it does not help much in understanding the disease and how to help BD patients.   But it is somewhat comforting to know that BD patients will not necessarily get all that we read and hear of.

As this query seems to concern a relatively young BD patient, one thing I could say is:   I had BD symptoms since childhood but was diagnosed at the age of 48.   It would have been helpful if some of my BD symptoms, though untreated, were seriously acknowledged to be true indicators of my health, rather than charged off to my imagination.

Best,

M

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Thanks M my daughter is nearly 21 the biggest problem seems to be that hardly anyone medical knows what it is or how to deal with it!

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Hi sorry to hear about your daughter and the fact that you feel so confused with many issue's  since being diagnosed with behcetts disease I my self have found it very challenging, behcetts disease effects the whole body so every body with this awful disease is different and has many different stories to tell everyone's journey  is different,  my advice to you would be the contact the birmingham city hospital centre of excellence and they will send you a pack on behcetts disease and also the many different medications that treat the condition and also information on the types of tnf treatments nd put you in touch with the behcetts  help line I wish you all the best and hope you daughter gets all the help and information she needs 

regards

mandy lee raichura 

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Thank you Mandy I will get in contact with Birmingham

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There is more than one Centre of Excellence, here is the link

behcets.nhs.uk

Your daughter can ask her GP for a referral if you stay in England as they are nationally funded and it won't cost them anything. 

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Thank you

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