Do you have a child with this rare disorder?

[sunflower81]

My daughter who is Eleven was just diagnosed with this disease, I would like to know if you have a child who also has this and can share some helpful information and support groups you can give to me? Thank you so much for sharing in advance.

[tarifa]

Hi, I wonder what is the actual MPN that Eleni has been diagnosed with. Yes it is rare for children as far as I know and it might be worth joining a support group from the US as they are in much larger numbers than us Brits, so more likely to know of youngsters. However, as well as ET myself, I carry an x-lnked disorder so my son had a severe, life-threatening immunodeficiency from birth and as far as I know it's far rarer than MPNs. That said, he's now 29 and 6'4 and has adjusted to managing his health and treatment, so living life to the full. The biggest difficulty for us parents is to support our children in adjusting and coping with serious health issues and helping them ensure their lives are still lived to the full. Our own fears and emotions have to be hidden below the surface, so ensure you have emotional support too. The only condition I could think of that comes anway near would be diabetes type I in youngsters, so your local surgery should have experience in helping youngsters deal with any issues. And if necessary shop around for the right haematologist, centre and GP. I would imagine GOSH are a good source of info, and I think you can contact them via their website if you're not already in touch, or just phone the relevant department.

[kentuckyrain]

hi there, my 5yr old was diagnosed with ET last April. wish i could offer u some words of wisdom but im looking for some myself. One think i can say is be informed and do your own research

[kentuckyrain]

sorry i also ment to ask, which mpd was your daughter diagnosed with?

[sunflower81 in reply to kentuckyrain]

Polycythemia Vera

[Jennie_Barnes]

Hi

I was diagnosed with ET when I was 13 years old. My advice to you would be to not treat your child any differently, they don't need wrapping up in cotton wool and should be able to live there life as a completely normal child would do.

My parents never referred to my MPD as a type of blood cancer, they just told me I had a rare blood disorder but as long as I took my medication I would stay well! which I have done for 10years +

Hospital trips where always a fun day out for me because I got to get time off school and got to have McDonalds for dinner on the way back!

Until I was 16 I didn't even no there was anything wrong with me, yes I felt tired sometimes and a bit sick from my medication but I thought that every kid had off days like me.

Number one thing to remember is don't let your child start feeling sorry for themselves and don't let them think they are any different to anyone else and need special treatment because they are ill. Yes be mindful that they might get a bit more tired than other kids but make sure that they are still getting involved with everything their friends are doing.

Hope this helps you.

Jennie

[sunflower81 in reply to Jennie_Barnes]

Hello, how is ET and PV different or similair? My daughter is 15 she was diagnosed with Polycythemia Vera at age 12. What medication are you on and side effects of it? She is on Pegasys Interferon. .. thanks for sharing. ...