Last week I went on vacation to Washington, DC where the little people of America convention was held. While there I went to the Primordial Dwarfism meeting and met with the doctors doing research for the primordial.
After years of “not knowing where I fit in” as far as my dwarfism goes, this year Saul Wilson was finally placed in the primordial group and I can officially say that I have primordial dwarfism. Finally my dwarfism belongs somewhere. There may only be 2 people with Saul Wilson right now- but we belong.
The doctors still do not know what genetics cause Saul Wilson, but they are hoping with the genetic research from me and my family and from Michelle and her family that they can have a starting point.
They would really like to find more people diagnosed with Saul Wilson, and so would I, but the fact is right now there aren’t any more known cases. Hopefully in a few years once the research really starts to get into affect we will be able to find more.
But for now they start with me and Michelle.
It has been 5 years since the primordial dwarfism research has started and they have already learned so much in that little amount of time. I am hoping that I to gain some answers that I have wanted to know most of my life.
But right now I belong somewhere and when I saw that pie chart and saw the “1% Saul Wilson” along with the names of all the other types of primordial dwarfism I knew that this is the start to gaining answers and knowledge about my dwarfism and I cannot wait to learn more!