My 22 year old son has Primary MF and one of his sisters is a 10/10 stem cell match for him - a wonderful thing for us all to hear after we discovered that a stem cell transplant is currently his only avenue for cure.
My daughter is keen to raise awareness of the need for more people to register as stem cell donors who can be life savers for people with MF and has decided to focus on The Anthony Nolan Trust for her fund and awareness raising efforts. Please see her link:
Please pass the link on to any healthy person over the age of 16 you know who may be eligible to register or to anyone who may wish to donate a few pounds to support her effort. (People over aged 30 can register at DKMS)
Ironically, before my son was diagnosed with MF, he was an active campaigner for donor registration and he was greatly saddened that he had to remove himself from the register following his diagnosis.
Thank you!
Written by
christiev
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What a wonderful thing your family is doing and how thankful your son would be that his sister is a match. You will all be sharing a very meaningful life together and a great inspiration to the world. Thank you.
Naturally, I feel for you with your son, but as you say your daughter is a 10/10 match, and that is wonderful news.
I also have Post ET/MF. Which is code for Myelofibrosis after an initial diagnosis of Essential Thrombocytosis (ET).
You must be very proud of your daughter, as am I...
I wish her the very best w/ all her very positive endeavours.
I am from Sydney, Australia, and I have a website there, where I am also doing a Fundraiser for research specifically into MPNs here in Australia, where there is practically nothing been spent on research because they are just such rare conditions etc.
Please tell you daughter to email me and I will place a Link for her on our MPN Services page if she likes...
Hello and thanks for your reply which I have copied to Kitale (daughter). I'm sure she'd love to be in touch (does she contact you via the MPN-Mate site?) and you should hear from her soon. Kitty and another daughter were born in Sydney where we lived for 10 years! Kitty went back to Sydney for her gap year a couple of years ago before university (she's now studying medical science). We all cherish our Aussie passports which we were lucky enough to get before we returned to the UK.
Well done for the mpn-mate website - fantastic work. I'll keep an eye on it too.
Best wishes to you and hope all goes well with your treatments for your MF. Things are looking increasingly positive in the world of MPN treatment research so do stay positive!
My husband(age 48) is diagnosed with MF recently , we are waiting to see transplant team at Barts. Nice to know that she is 10/10 match for her brother. God bless your children, they have really big hearts. I will donate via justgiving.
Hope all goes well for your husband - things are looking very encouraging as far as both MPN treatments go and the safety and efficacy of transplants is improving all the time too. 48 is a young age for MF too - but from what I understand, younger people have an easier time with transplants. I hope you've got lots of support for yourself - it's tough having family members go through this and you deserve lots of help and attention too!
Yes - can be very irksome indeed when people aren't willing even to donate blood - Frustrating and hard to understand or know what to say to them.
I've been a blood and platelet donor for decades and recently was very excited to find a text message arriving a few days following each donation letting me know where my donation has been used. Made me super smiley knowing that in 'Cambridge' or 'Halifax' etc an actual person had just been helped by my actual blood! wow! I'm sure if everyone knew they'd get such feed back it would help them be more generous or brave or just more bothered to go along and donate!
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