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familial mds- two brothers born 6 years apart.

This topic has 4 replies, 1 voice, and was last updated 14 years, 5 months ago by tina.

Viewing 5 posts - 1 through 5 (of 5 total)

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December 8, 2009 at 11:28 pm #22434

tina
Member

Please can anyone tell me if this has happened before.
I have a 6 year old grandson Regan who was diagnosed with MDS at only 9 weeks old in 2003. (Cutting a very long story short) he received a stem cell transplant at only 6 months old. Regan is today in excellent health and is truly an inspiration to us all.
As Regan was the first born to my son Jamie and Kirsty his partner, we asked the doctors when Regan was poorly if this could happen to further children of Jamie and Kirsty and they were assured that it could not happen again. So after 6 years in September this year 2009 they had another son a beautiful brother for Regan called Kaiden. (To cut a long story short again) since Kaiden was one day old he has had to have platelet transfusions and we have just been told that he too has this terrible illness MDS. Can anyone answer my questions
how has this this happened again?
does anyone know anybody who is, or has been in the same situation as this.
As you can imagine we are all devastated
Please does anybody have an answer for us
from Tina

December 10, 2009 at 6:09 am #22435

lindajo
Member

It is extrememly rare to have familial mds. I have only seen one article about it in 19 years. I don’t believe I have it readily available. I will look for it. Check with NIH (National Institutes of Health) and search for the article. I am sure that is where I found it initially. Linda

December 10, 2009 at 1:24 pm #22436

marlene
Member

I too would check this at NIH. Did they rule out Black Diamond/Fanconia anemia. It’s very possible it’s not MDS but a hereditary/genetic type of anemia. I know when my husband became ill and even though he was 50 YRS old, they still did the genetic testing on him at Hopkins.

I cannot image how heartbreaking all of this must be for you and the family.

Please try to get a consult at NIH if you can.

December 10, 2009 at 2:39 pm #22438

marlene
Member

Here are two links on genetic anemia that may be of interest to you. They explain the tests needed to diagnose. I hope this helps.

http://www.dbafoundation.org/diagnosis.php
http://www.nhlbi.nih.gov/health/dci/Diseases/fanconi/fanconi_diagnosis.html

December 12, 2009 at 12:18 am #22441

tina
Member

Thank you Lindajo and Marlene for your reply yes I will ask about this when we go back to hospital on Monday. I will also contact the NIH. I will keep you informed on progress. We are all devastated never thought it could possibly happen again.xx
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