Just realised that I have not updated the blog in ages. Thats because nothing much has been happening. In the world of ataxia, things tend to move slowly. Like the mills of god, which grind slowly but surely.
It is also a whole year since I went to China. So it is a good time to review the progress made. If I look point-to-point from last winter to this one, things have definitely become worse. Would things have been 'worser' if I had not done the stem cell treatment? Who can say? It is more difficult to get dressed in all those recommended layers and get to work. But at least I am still working, so I guess I must be grateful for that.
Let me sign off for now.
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4 comments:
Hello Ataxia Man ,
I came across your blog very recently and I thought I HAD to write to you.I am a post graduate microbiology student and I have always read about stem cell therapy. I am reading a first hand information for the 1st time.
You are being really brave.
You have the courage to write so much about your illness and what you are going through.I am sure that with your positive attitude you will improve a LOT !Please keep writing and keep the readers posted.
May the force be with you.
Hello Ataxia Man,
My brother was diagnosed with SCA Type 7 and as a family member after initial shock and grief, research becomes the next step.
I have come across two very important advances that may be of interest to you:
1. The following link reflects a 2 year study in France that although was directed towards research in MS was unexpectedly observed to be of value to those with ataxia.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2064165
There is a common treatment used in MS patients called Beta Interferon, this escalates levels in our bodies (PML)which strength our immune system in a micro nuclear sense. Basically in a lab it was observed that increased levels of PML worked to prevent the accumulation of various mutant Ataxian protiens. My brother has a mutant ataxian 7 protein which becomes toxic to the brain, thus resulting in brain damage. This work showed that the protein was kept from accumulating thus preventing toxicity slowing the progression of the disease dramatically.
I have been in contact with this group and they are currently working to develop mouse models with ataxia to test for any obvious improvements. Once this is complete, normally studies in primates (monkey's, etc...) are tested before phase one clinical trials are performed with human patients. I was told that from mice they are considering pre-clinical trials directly in humans?
The other major announcement happened right here in Toronto
http://www.healthzone.ca/health/article/595058
A technique to reverse engineer skin cells directly from patients into stem cells will be an important step towards using stem cell treatment and eliminating prospects of possible tumours and immune system rejection. There are other groups researching how to take and re-engineer DNA, these two camps when put together will one day allow for stem cell treatment from a patients own cells with the added advantage of re-programming the defective genes.
Have hope brother, I wish you and your family all the best.
thanks both of you for your encouraging words.
thank you for your post. We have AC10, and I have definitely noticed the effects, recently. I'm glad to know I'm not alone in this disease which is very strange indeed.
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