Update on Saul Wilson Syndrome

Hello everyone and thank you for all the comments in regards to the new documentary out of Denmark on Piet.

This last year has been an interesting one when it comes to the latest news on Saul Wilson Syndrome.  Last August I received a phone call from doctors that I had been waiting my whole life to get.  The doctors had new discoveries in regards to Saul Wilson and they were excited to share what they have learned and even invited me to the National Institute of Health to do tests and scans to learn more.

This chapter in my life with these new discoveries is what I have spent my life working towards.  I always knew my mission in life was to teach others and to learn more about my syndrome.

I am the leading person in this fight to learn answers and I feel as though I always have been.  For me answers is everything and I’m not even trying to really find answers for me any more, now its about finding answers for the others (there are now 13 known cases in the world- last year there was only 2!)

Grant it I do hope that doctors can learn more and help me in my quest to find the answers in which I have always had.  But I have had 30 years to accept the fact that I didn’t have answers, so I have come to terms with that in a sense.

I hope these next few years we as a group grow even stronger and learn even more…I know this is only the beginning and I can’t wait to see what comes next!!

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