I have been reading a lot about this and seems this is the cure for our dieses I am currently trying to get this done has anyone had it done or can tell me more about it thanks.
If anybody wants more info then please do message me and will forward the forums and websites I have been looking into. They seem to be doing the treatment over in America but not in the UK as of yet...?
T
I believe it is in the UK but reserved for patients with a predicted very short remaining life (6 months? I can't remember the period exactly) as there's a 50:50 chance the procedure will kill you. It was talked about at the scleroderma and raynauds conference a couple of years ago in Bath.
It was covered at the sruk conference a few weeks ago. It is carried out in the uk now but only for those with a poor prognosis and no heart involvement as there is about 10% chance it will kill you. Although this does seem to be improving over time, it used to be about 50%
Hi Tmunney, as mentioned by Steph it was covered in a lot of detail at the SRUK conference and there was an inspirational young lady, who had had it done in America and there was also a lady there who was in the process of having it done. Maybe if you contacted SRUK they could put you in touch with one of the people or talk to you about it in more detail. Good luck with your research xxx
What is the sruk sorry I don't understand what it is and have you got a contact for them for me please thanks T xxxxx
Tmunney I'd like to see what you've found please.
My scleroderma is running away with me at present and I am scared where it's going to take me. My skin is now so tight that I have very restricted movement in my arms and I can no longer pick anything up off the floor.
Over the past 18 months I have had every drug going and I've just had my 2nd dose of cyclophosphamide. Nothing has really worked so I guess stem cells are my only real chance now?
Thanks for sharing.
Hey... so I went threw a stage of trying to find something and anything that will work... heard so many success stories with the stem cell transplant, so mentioned it to consultant. Unfortunately it was not suitable for my husband as me has had this for over 15 yrs. consultant says it’s best used on people that have newly been diagnosed mention it to your consultant and fingers crossed they think it will benifit you xxx
OH NO..MY FINGERS AND TOES ARE NUMB AGAIN!
Pre Scleroderma Confusion
Creatine Kinase Raynaud's Syndrome
Pictures nails and nail folds
