Vasculitis UK
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genetic testing

I have UV and although the diagnosis is confirmed, no cause can be found as to why I,m having really nasty flares roughly once a month, To cut a long story short my Rhuemy who I saw on friday is requesting a blood test within 3hrs of a flare and another one 24hours later, but he also says he,s reffering me to a specialist Gentic testing ? hospital in North London, has anyone had experiance of this and the reason for it , and if anyone has ,did you find it helpfull,I,m getting really exhausted with it all and not really getting anywhere. today my face feels all tingly and I,ve been feeling very tender to the touch at my temple,I don,t know if it,s just a touch of neuralgia,or another symptom. any info anyone. thanks.

5 Replies

Interesting question as I had also thought that there may be a genetic link from the research I had done since being diagnosed. John Mills indicated at a speech he had that there may be. On that I would suggest ( however morbid it may sound) that you research your ancestry ( there are various sites to enable you to do so) and find out your ancestors, both male and female lines, and look at their death records. Often it is recorded what they died from.

Vasculitis and associated diseases and their effects was often recorded as consumption, an earlier term for Tuberculosis and other related diseases which corresponds with some of the effects we know today within the various forms of vasculitis. It's worth a shot and also as a bonus you get to know your ancestors and who they were, who they married, what children they had and what they did. I hope that this helps. Remember the more intelligence we can gain on our disease and to share it, helps all of us in the fight against this disease.


I have HUVs and my daughter is tested every six months. We have been told two reasons. Some of the consultants, pediatric, allergy, immunologist, have said between 50% -100% she will get HUVS due to genetics. The other reason is that I had several blood transfusions before she was born and passed it to her, probably when pregnant.

I've had those blood tests but the timing for me is before meds are given in an attack and then after. ..I attack 2-3 times a day so maybe Tbe timings were shortened.

God muck with your appt....


Oops sorry. .good luck.....predictive text


at least that gave me a smile


Hi, i had genetic testing. I was negative for both genes. Mine is serous not clear cell. Try not to worry too much. xo


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