Wednesday, March 25, 2009

Common Rare??

I am always trying to find some new info on SMA and today I came across a phrase that I have seen before but today it stood out to me. They call SMA a common rare disease. COMMON RARE?? Yes common because 1 in 40 people carry it. Yet it hardly ever shows up. But I think that it presents more often than is reported but the cause of many infant deaths is ruled sudden infant death or other causes. Our PT told us a story of a mom and a baby who she is sure now had SMA but the baby died during a nap. Mom put the baby down for nap time did a few things and went in to check on the baby and he was gone. I cant even imagine. Remember 1 in every 40 people carry the gene for SMA. Help find a cure go to sign it and pray.


Victoria Strong said...

I am always puzzled by that one, too. And, I have also heard that the SMA incidence rate is probably much higher, but many babies are labeled as SIDS. If we had not taken Gwendolyn to the pediatrician when she was 9 weeks old -- that would have probably been her. She seemed fine, but by that night in the PICU she almost stopped breathing.

Anonymous said...

I went and signed the petition. Hopefully some day soon they will find a cure for this. Have a great day. Bobby and Lisa (

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