Maureen

[HELPY]

Hello im new here my daughter has Behtets it took quite some time to diagnose as its a foreign disease and my son is going through tests just today back to hospital for blood tests my the amount of meds is scary how on earth did i as their mother get it beyond me ..

[sam0511]

Bless you Maureen, it is not something you pass on - it is genetic, but not all with all the genetics in place will develop the disease. It made me chuckle when you described it as a foreign disease - my mum did the same! But I am 100% white and British, but having looked back at my family, I can see where I have inherited the building blocks for it if you like. It is often referred to as the silk route disease, being very prevalent in Turkey and Asia. The reason people like myself and your daughter develop it is relatively unknown, but it could be down to a number of factors. I sound like a medical journal at times, but it came as a shock to me too. I have been suffering from symptoms for years, but I was given a definite diagnosis 12 months ago. Please keep posting on here, as you will find other members a great support as I have. One of the worst factors for me was feeling alone with this, but I don't anymore thanks to the contacts I have made on here, so well done you for finding this group and getting in touch. Please ask me anything. Wishing your daughter all the best.x

[HELPY in reply to sam0511]

I know Sam i guess it was my way with words being Irish glad you got a chuckle tho colour race or creed dont matter where lives are concerned in our world just need to know if a lumbar puncture is necessary my young son of 3o is getting tested after having a bout of Strep if hes on BD meds is that a positive sign any and all replies welcome thanks ....Maureen X

[sam0511 in reply to HELPY]

I didn't have lumbar puncture - was diagnosed on symptoms. Even blood test came back negative, but it was confirmed after my consultant discussed my case at a Behcets conference. I would ask a few questions as I understand a lumbar puncture is not pleasant. Keep us in the loop!

[Willdrich]

hi there I'm Willdrich's mother my son is 9 and also new to us...my heart is with you..we are staying in South Africa...and I'm great full for this support group...my blessing to you and your family...please ask...

[HELPY in reply to Willdrich]

Hello too Willdrich from Dublin Ireland .....

[billi]

Hi and welcome to the site. I have suffered with Behcets for 32 years and back then it took me 7 years to find anybody to help me and that is when I first heard the word Behcets and was diagnosed 5 years later. There are no blood tests or other test for Behcets, it is an autoimmune disease, it is incurable and the diagnosis comes after you have at Least 3 symptoms out of five in the period of a year. It sounds scary and it is very painful and unsightly at times but you can still live a good life. Firstly you must accept the disease, in other words don't waste time looking for cures or more answers and magic meds ...there are non and stay positive and strong. I have seen research and more meds and treatments coming to fruition and many more doctors are now aware of the disease. If treated properly your children can have a full live. If you have any questions at all please message me privately and I will do my best to help you through. It is known as the Silk Road disease and it does seem to be prevalent in certain genes one of which is Irish. I do hope this helps.

Billi

[Sunset]

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