Childhood/Paediatric MDS

MDS can affect children in some very rare cases. Please post here if you are a parent of a child with MDS.

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Childhood/Paediatric MDS

Post by sophie » 12 Apr 2012 13:05

MDS is generally a condition affecting older patients - however - sometimes young children are diagnosed too.
If you are a parent or grand-parent of a child with MDS - please post here.
It is also worth registering with the online forum of the MDS Foundation for contact with other parents. Their online forum has more members - so it is more likely you will find more parents to talk to.

If your child is affected by JMML - Juvenile Myelomonocytic Leukaemia - here is a specific source of information and support:
JMML Foundation
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558

Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
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Joined: 20 Feb 2013 11:40

Re: Childhood/Paediatric MDS

Post by lizzylouise » 20 Feb 2013 13:36

Hi there, I am just diagnosed at 39, but, I have spent my life with unexplained low blood counts and various symptoms especially in my pre teens. I have a son who is 11 who is sadly also displaying some of the same symptoms but none of his counts are a "worry" as yet. If I can help anyone with children affected based on my own experiences as a child I would be more than happy to do so. I was always an Enigma to the doctors until finally I got a bone marrow biopsy. Liz
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