Paediatric MDS

[yvette]

Firstly, thx for producing this site & forum!...we have a 7 year old son who has recently been diagnosed with MDS....(as mentioned, he too, looks, feels pretty much normal...except bruising and almost constant cold!) He is due to have a bone marrow transplant in the coming months.Unfortunately his brother wasnt a match, so they are looking on the registers for a match. We are told this condition is very rare in children (in fact anyone under the age of 60)...and we would love to hear from anyone else who are currently, or have in the past experienced a child with this condition...in fact we'd like to hear from just about anyone who has any light/encouragement to throw on the subject!...

[Yak]

Hi Yvette, welcome to the Forum! I'm sorry that I can't offer direct advice to your situation, although I too don't fit the statistics of the condition, being in my thirties. From a practical point of view, given the rarity of the condition and particularly your circumstances, I'd be interested to know where your son is being treated? One of the things you'll see emphasised across the forum is that it is worthwhile trying to get an appointment/opinion from a Centre of Excellence within the UK (designated hospitals with experience of the condition).
I'd also suggest you post to the questions thread within the forum to make sure your question gets seen by others who may be able to be more helpful. There's a Patients forum being held in Leeds (see details through the main website) next month which would be useful for you to attend if possible to ask questions and meet other patients.

Sorry I can't be more helpful.

Kay

[Sophie]

Dear Yvette,I would suggest you also take a look at the MDS Foundation Forum, as I know some of the users are definitely parents of children with MDS.
The vast majority will be Americans, but the issues faced will be the same.
They are usually very quick at responding.
You will find the link on www.mds-foundation.org
Top left hand column

Please feel free to ask questions on either forums - the other users may have come across some similar situations and will share with you how they are handling it.
Usually you also have a specialist nurse with whom you can talk. Do you have her contact details?
There is also a booklet available called the 7 Steps - available via Leukaemia Research - or your transplant nurse. It tells you all about the transplant process. If you wish I can also mail you the MDS Patient Booklet - just email me your home address separately via the main email address.

Let me know if I can be of any assistance - feel free to call on the main MDS UK Number 020 7733 7558.
Sophie
Patient Liaison