Stem cell transplant

[Typicalmommy]

Hi all I am at the moment awaiting a stem cell transplant for my systemic scleroderma as advised by professor Denton at royal free and was wondering wether anybody out there has had it and what was the result x

[zenabb]

My cousin in America had it a few years ago. From a dying woman with constant oxygen, she is now back to normal. You are lucky to have it offered to you.

[Typicalmommy in reply to zenabb]

I would t say lucky it's my last chance of a normal life with a 1 in 10 fatality big decision to be made

[Chrissiebladen in reply to Typicalmommy]

1 in 10 sounds good to me, means you have 9 chances of it working, 😁 good luck x

[Jinty65]

There's a private (American?) Facebook group called Scleroderma Stem Cell pioneers for scleroderma patients treated or interested in being treated with HSCT. You would have to be registered on Facebook and request to join the group. Hope this helps.

[silent]

I have done a lot of research on this, and it seems to be the closest thing the scleroderma community have to a cure. I've heard many positive stories about this treatment, essentially it reverses the effects of scleroderma and restores your immune system back to normal, not attacking itself, no more collagen build up. Pioneer of the treatment is Dr Richard Burt (feinberg.northwestern.edu/f... (youtube.com/watch?v=yi49gJk...(Not working as expected?). Is this being offered on the NHS, if so which part of the UK? Sadly too late for my girlfriend, she lost her battle 964 days ago now...

[Jinty65]

Here's a scleroderma foundation video of a patient's experience of stem cell transplant youtu.be/ncxuuYHzM0o(Not working as expected?)

[Typicalmommy in reply to Jinty65]

Thank you watched the video last night very reassuring xxx

[cleoshome]

No, but would surely do anything if it would help me. I am anxiously awaiting future posts from you, to see if it works. Iknow for non hodgkin's patients they are in remission.

[truerose]

Good look I hope every thing goes all right for you Merry Christmas Truerose

[missgreat_19]

Hello

Good to hear that you are offered for stem cell transplant.

Can you tell what is severity of your disease? duration? type of scleroderma? and treatment you are receiving?

finger crossed for your treatment!

[Typicalmommy in reply to missgreat_19]

Hi I have systemic scleroderma had it going on 5 years and it effects 80 per cent of my skin consultant says I am ideal candidate for it x