Smith-Magenis Syndrome
Published by jbog on Tagged Clubcast, Smith-Magenis Syndrome“Smith-Magenis Syndrome…what is that?” That was my reaction when my sister first told me about her grandson’s diagnosis. Colin had a variety of medical problems but the doctors were not sure what was wrong. Finally the diagnosis was made…Smith-Magenis Syndrome. It is estimated that SMS occurs in about one out of every 25,000 births; however, it is vastly under-diagnosed because it is not well known. Randy Beall, President of PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome), along with Diane Ulrick (the ‘D’ in Club DEB), join me for an honest discussion about Smith-Magenis Syndrome and the challenges and joys of raising an SMS child. If someone you know has been diagnosed with SMS, tune in to hear my guests as they share the facts about this rare syndrome.
September 1st, 2009 at 4:32 pm
This has reached over here in the UK. thanks so much for covering this syndrome in your interview. I’ve posted it on my facebook page for my friends to listen to, as my Son has SMS. It’s a help to hear other parents and ideas.
Thanks Again
September 1st, 2009 at 9:35 pm
Your welcome Salli. Thanks so much for posting your comment and letting me know. My best to you!
September 1st, 2009 at 10:45 pm
Wonderful to cover SMS- Right now my daughter is in NIH SMS research.
Posted the link on face book….:)
Canada
September 27th, 2009 at 6:54 pm
thankyou for sharing this i am from the u.k i have a son who’s 2 with sms x
September 27th, 2009 at 7:52 pm
You are most welcome. I just posted a post for a free electronic brochure for those with SMS children. You can edit and print to make it personal to your child. Email me if you would like a copy. You can go to this link for more information. http://www.clubdeb.com/?p=958
November 16th, 2009 at 9:46 am
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