I saw an extremely sad interview about this disease recently with Bob Saget a month before his death. He was a national spokesman and fund raiser for this “orphan” disease (less than 300k people)
Hits close to home for me, an extremely close loved one was diagnosed before the pandemic hit. Fortunately she is close to one of the 2 top research centers and remaining on an upbeat coarse.
Seeing this interview and how it killed his sister, really hit home. Seeing current reports how he had it too and it may be a COD ( 80% of are women) hit home too.
In case anyone is interested in the interview, it’s kinda sad because he died on the anniversary of his sisters 75 birthday. Weeks before he died, Bob Saget opened up about the tragic death of his sister
Hits close to home for me, an extremely close loved one was diagnosed before the pandemic hit. Fortunately she is close to one of the 2 top research centers and remaining on an upbeat coarse.
Seeing this interview and how it killed his sister, really hit home. Seeing current reports how he had it too and it may be a COD ( 80% of are women) hit home too.
In case anyone is interested in the interview, it’s kinda sad because he died on the anniversary of his sisters 75 birthday. Weeks before he died, Bob Saget opened up about the tragic death of his sister