Any help in Florida?

[Susanissufferingtoo]

Hey y'all, seems like being here feels like I'm doomed😢 I really want A stem cell transplant. How would I get it? How do I sign up? I

Really wish I lived in the U.K . I've read alot of stories here. Seens like they help you more. Someone plz help me.

[honeybug]

Xxx

[positivedaybyday]

Hi Susan,

I live in the Uk & had Stem cell treatment in May of this year. I was referred by my consultant as my scleraderma, although in the early stages was so aggressive with Microphenolate not controlling the illness. I have the full blown acute cutaneous systemic sclerosis! There are many factors taken into consideration. In the UK you had to be under 65 & go through a lot of extensive tests to make sure your body & mind were strong enough as there is a 10% chance of not surviving. Reading a few research papers from the US, it seemed the age limit was lower at 60 years old.

So the 1st step is to approach your consultant & discuss any possibilities. Six months on I' m feeling so much better though I believe my progress has been slower than the few others who have been lucky enough to have had the treatment. I am however 64 so only just made the age limit. Luckily I've always been fit & healthy before this illness so my body was in good shape for my age. Good luck I hope you are successful! Xxx

[Susanissufferingtoo in reply to positivedaybyday]

Thankyou so much for the reply. I'm wanting it done so bad! God Bless you! It sounds like yours may be gone or on its way for intermission

[Bec9680]

Please go to roadback.org find a doctor on there..they’re saving lives. Apparently most of scleroderma patients are infected with mycoplasma bacteria. Here’s an article to get more info. I have been on the antibiotic treatment for 4 months & my symptoms are reversing! There are so many people that have great success with this treatment.

blueridgesilver.com/blogs/n...

[Susanissufferingtoo]

Really!? I'm gonna check this out! Thankyou so much! I'm desperate for a cure😣

[LisaCl]

Have you tried to get into a clinical trial?

[Susanissufferingtoo in reply to LisaCl]

No. Where do I start? Plz tellme

[LisaCl in reply to Susanissufferingtoo]

There is a Facebook group associated with Dr. Burt at Northwestern University. He has clinical trials for various diseases.

m.facebook.com/groups/46012...

[Susanissufferingtoo in reply to LisaCl]

Florida?

[LisaCl in reply to Susanissufferingtoo]

I have never heard of it being done in Florida. I can only think of maybe 5 locations in the US.

[LisaCl in reply to Susanissufferingtoo]

There is a general discussion group specific to Scleroderma but not any specific hospital.

m.facebook.com/groups/16088...