Scleroderma & Raynaud's UK (SRUK)

Anyone live in or around Buckinghamshire?

I was diagnosed with Scleroderma 6 years ago but had raynauds and the antibody for 8 years. I have been having iloprost treatment for 6 years was annually but now every 4 months. I have a Port A Cath inplanted in my chest for access (thankful for) it keeps my finger ulcers at bay but my feet are annoying these days. I have reflex, oesophagus, bowel problems and get fatigued but fight it off. I have had to change jobs which has worked out for the best but was pretty upsetting during the transition. Anyway my organ involvement is thankfully limited.

I am under the UCLH and Royal Free in London. I think they are great at what they do and forever grateful to both teams. It would be nice to meet and have people to talk to locally with these conditions. I am also a keen fundraiser and have quite a bit of experience I am planning on going on a week of awareness and fundraising to assist in the contribution for the Cool Million for research that the raynauds and scleroderma association are aiming for. This will be in June......... Anyone interested in any of the above I would love to hear from you on here or my email is

1 Reply

I live in the North East and therefore unable to meet you. Your message is very interesting to me, I have the same as you. Tell me, what is Port A Cath that you have implanted in your chest. It's the first I have heard of it.

About the fatigue which has plagued me, recently I have been found to need Vit D and I also take Vit B complex. I started both two months ago and I don't feel as fatigued.


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