Stiff Person Syndrome, and Stem Cell Transplant

Most of us are aware of Stem Cell Transplant, and the debate as to whether or not it’s helpful re Ataxia.

Ataxia can be connected to an Autoimmune Disease, the one I refer to here is Stiff Person Syndrome. In this specific instance Stem Cell Therapy is a promising new treatment for people suffering from Autoimmune Disorders.

For the full story of how a Princeton woman is coping,
see pjstar.com/article/20150801/News/150809986

:-)xB

thanks Beryl.

I tend to have a vague interest in stem cell transplant as I am 75 quite soon.

That has all changed as my son's partner is pregnant and he, quite rightly wants to know if he is a carrier or will present with ataxia. He has had his bit of genetic testing done and I am waiting for an appointment. He is now 32. When I saw Dr Giunti a while ago she could only say the chances of him inheriting ataxia were 50/50. I have never really talked to him about ataxia on the premise that it might never happen to him, although at the back of my mind was the need to warn him when he got married.

His partner is lovely and very good for him and both Bob and I love her. The baby was unexpected although both families are delighted.

It might be a case of shutting the stable door etc etc.

So, from being totally selfish, I gobble up any news about developments.

love and light

S-J

Hi S-J :slight_smile:

Personally, I would only consider this treatment as a last ditch attempt, I’m 64. This lady is being treated in the U.S. so hopefully everything is going ok for her.

My daughter would like to start a family, there’s a one in four chance of her actually inheriting my Ataxia. At the moment she shows no interest in being tested, it’s a personal decision but I’m becoming aware of symptoms similar to mine, she’s 35.

Like you I wanted to discuss the pros and cons, just so that she was aware, educated if you like.
Neither her or my son want to know anything about Ataxia, they’re caring and supportive of me but don’t show any actual interest. Perhaps this is some kind of defense, ignore it and it won’t happen.

I sincerely hope all goes well with the expected new arrival, I bet you can’t wait :-)xB



Sarah-Jane Squire said:

thanks Beryl.

I tend to have a vague interest in stem cell transplant as I am 75 quite soon.

That has all changed as my son's partner is pregnant and he, quite rightly wants to know if he is a carrier or will present with ataxia. He has had his bit of genetic testing done and I am waiting for an appointment. He is now 32. When I saw Dr Giunti a while ago she could only say the chances of him inheriting ataxia were 50/50. I have never really talked to him about ataxia on the premise that it might never happen to him, although at the back of my mind was the need to warn him when he got married.

His partner is lovely and very good for him and both Bob and I love her. The baby was unexpected although both families are delighted.

It might be a case of shutting the stable door etc etc.

So, from being totally selfish, I gobble up any news about developments.

love and light

S-J