Boston

Hello everyone, hoping to log in more and give updates.  Just got back from Boston convention for little people.  Was able to meet with the doctors and at this time they don’t have any new information, which is pretty much what I thought they would tell me.

While I was there I googled Saul Wilson Syndrome (thinking I wouldn’t find anything new) but I found a case study that was done on a boy in Japan.  I brought the information to the doctors and they did not know of this case.

It’s amazing to me how I have gone searching several times and every once in awhile (not to often) I end up finding another case.  I’ve found 2 cases just by typing my dwarfism into the search engine and hoping for the best.

Which brought me back to here.  I started this blog because there is nothing out there for Saul Wilson Syndrome.  Right now I am fighting for this alone but my hope is one day this will be the database for others…this will be a guide.  Others will have the answers that I never did and knowing that gives me hope.  It can be years from now, but I am here to be the one who started advocating for the future and to me that is a great thing!

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One Response to Boston

  1. Maureen says:

    Yes Monica. That is a very big thing!

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