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MDS and genetic relationship to surviving sibling

This topic has 2 replies, 1 voice, and was last updated 14 years, 5 months ago by tina.

Viewing 3 posts - 1 through 3 (of 3 total)

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November 11, 2009 at 1:15 am #22406

sharyn
Member

My brother was diagnosed in May 2007 with advanced MDS. He was totally transfusion dependent and finally underwent BMT. As his only living sibling, I was tested first, and was a perfect match for him I gave him my stem cells, but he passed away 13 months after transplant due to complications of fungal pneumonia. Is anyone out there, who has been a 100% match for their sibling, ever developed MDS later on? Is there a way to be tested to see if I have the chromosome? I underwent zillions of blood testing prior to his BMT, but not genetic counseling. I have this fear that I too might develop this, and I don’t have a sibling or parents alive. Thank you.

November 13, 2009 at 6:09 pm #22410

paml
Member

Hi Sharyn,
I’m very sorry about the loss of your brother. I too had a BMT; mine was done at Ohio State in March of this year. I don’t think that MDS has ever been proved to be a disease (syndrome) of genetics. The chromosome that you mention is actually a mutation in the marrow that occurs because of the disease not as part of your genetic birth makeup. I went many years with what I would describe (now) as an innocuous MDS-RA with no chromosome abnormalities. In December of 2008 when I was diagnosed with AML my marrow did have one of the high risk factor chromosome defects in chromosome 7. My stem cell match/donor/hero is my brother and we are 100% HLA matched. I should add that leading up to the AML dx I’d had numerous bone marrow biopsies over the 19 years that spanned the MDS dx.

Again, please accept my condolences regarding your brother.
Best Regards,
Pam

December 7, 2009 at 2:53 pm #22433

tina
Member

Hi, my first born grandson Regan was diagnosed with mds at only 9 weeks old in 2003 he had a stem cell transplant at only 6 months old in september 2003. He is an inspiration to us all he is full of energy and certainly lives life to the full.
We were told the chances of this happening again to further siblings were zero but after waiting 6 years they have had another boy a brother for regan who was born in September this year 2009. We have just been told that this baby also has MDS and they are now looking for a match to transplant asap. As you can imagine we are all devastated. has anyone known this happen before. We are so confused as we were told this could not possibly happen again and it has. WHY ?
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