Seven years ago this month I started writing this blog. On September 18, 2012 this blog became official.
That was the year that I offered up my DNA to Dr. Andrew Jackson, from Scotland, the only doctor to ever come up to me at a convention and say “you have Saul Wilson Syndrome.” To which I replied “you know about my dwarfism.” Dr. Jackson had in fact heard about Saul Wilson Syndrome but only because he had read the very few medical articles that had been written at that time.
Now to paint a picture here this was a great shock to me, my mom and my aunt because at that time there were only two medical articles that had been written about SWS and I was in one of those articles. The other one was the original. For someone to have actually read those two articles and have an interest in learning more…was a miracle to me.
For years I had gone to these conventions and no doctor had ever had such an interest or even had heard about SWS. This was the turning point for Saul Wilson Syndrome and this was where it all started.
A doctor willing to help and me with the determination to get answers. I had the dwarfism he had the knowledge to help. It was at this point that my aunt told me “you need to start your blog.”
Now seven years later and we know the gene that causes SWS and we now have 14 confirmed diagnosis.
When I look back on these last seven years it truly amazes me at how much we have learned. Seven years ago I would type Saul Wilson Syndrome into google and the only thing you could find was the two articles written in the 90s.
Now you type Saul Wilson Syndrome into google and my blog comes up, the recent studies that have been done come up, the original articles come up. Finally the research and information is out there for others to find. That is truly a blessing. Finally answers!