Systemic scerosis/,HHT

[Joanne_Evans030365]

Good evening all. I'm trying to find out of anybody has been diagnosed with limited scleroderma and HHT, hereditary heamorachic telangietasia. I saw a consultant today whom thinks i may have the both diseases, I now am awaiting an appointment for a brain scan for avm,s , to be totally honest I'm bloody scared.

[LucyJean]

Hi Joanne, don't start panicking yet. Quite often people with scleroderma will get checked out for HHT, because if you have prominent telangi then you need to identify whether it is caused by the scleroderma or whether you have HHT. The likelihood is that if you have other clear symptoms of scleroderma, that the telangi are caused by that.

I have lots of telangi on my lips and in my mouth and my dentist is really paranoid about it. He has known me for years and every time I go he says...you are sure you don't have HHT aren't you? It makes a difference as to the type of treatment they can give you without antibiotic cover. I have had a brain MRI and lung CTs and no telangis showed up there.

I have a colleague who has HHT and she has no signs of scleroderma but she has telangis on her lips and in her lungs, the latter needed invasive treatment to correct the problem.

I hope that helps

All my best

Lucy xx

[Joanne_Evans030365 in reply to LucyJean]

Thanks for your reply Lucy. This all started 2 yrs ago and was just used to the systemic sclerosis, being told I might have got another disease has just shocked me. I'll try not to panic till I get the results. Why couldn't I win the lottery or have a big house and pool,no I get a disease or 2 that I don't want lol xx

[Irene55 in reply to Joanne_Evans030365]

When I was diagnosed with systemic sclerosis I was also diagnosed with Polymiositis. When I read up on it I found that having what they call an overlap illness is not the worst thing. It means that you get a milder form of each illness. In my case it has meant that I don't have the facial signs of Scleroderma or the hardening of my hands. I don't know how the 2 illnesses you have affect you but in my case I feel lucky. My main symptoms at the moment are sometimes terrible fatigue but I have learned to rest when necessary. I walk a lot to stay fit.

Don't panic while you are waiting for the results. I wish you well at your appointment. I think we would all prefer to win the lottery instead of being ill. Take care.

[Joanne_Evans030365 in reply to Irene55]

Good morning lrene55. Thankyou for your reply. It's the telangiectasia on my tongue that's getting me so down, especially as they have started to bleed and eating and drinking is very sore, unfortunately my mouth and throat is full of them. Anyway. Trying to keep busy while awaiting the scan and results. Sorry to hear your suffering with an overlap. Take care of yourself x