Portland, OR UshStat Clinical Trial

I am so sorry to say this, but I just found out during my 11am appt with Dr. Weleber that I can't have the surgery. Their reasoning is based on my medical history - I had a reaction to a flu shot when I was 15 yrs old and contracted Guillian Barre Syndrome (GBS) for 3 months then went away on its own. Thankfully, when I had it, it was mild and only affected the lower part of my body.
The surgery would have consisted of an injection with a virus in it and it took the people in London a few days to analyze the risks and determined it was too risky. If I were to have a reaction and contract GBS again, the effects could be much worse and cause full paralysis. He went on to say that Franklin D. Roosevelt was thought to have had polio but now they are pretty sure he had GBS, and that actor Andy Griffith had GBS also.
At this point, they advised that any gene therapy or cellular based treatment would not be a good option for me until they understand the causes of GBS.
I'm disappointed but trying to make the best out of it.
Im still staying in Portland a bit longer to contribute to their research through visual field testing and retinal imaging. 
Thank you all for your love, support, and understanding. 

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Organizer

Heather Pavey 
Organizer
Austin, TX
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