Stem cell donor registry help

[DrVonPatak]

As I might have mentioned this before, my husband has a form of leukaemia. We, as a family and friends, are putting in a concerted effort to widen the base of donors for stem cells registry.

It costs nothing, they send you a swab kit for the inside of your mouth and a prepaid envelope, the only request is that the envelope is posted as soon after the swab is taken as possible.

You have to be under 61, UK resident and in general good health. The sample is stored anonymously until your 61st birthday and if there is a match found, all ot takes is a special kind of blood sample to donate.

I'd ask of you to please join in if you can, the more samples we have, the more is the likelihood that someone's son, daughter, wife, mother or father, brother or sister will beat this evil.

Also, if you're willing, sharing the link onwards would be most appreciated.

www.dkms.org.uk/en

I thank you in advance for your time and effort.

I have done it. Every time I get post from them (maybe once or twice a year) I get excited that they might need me, but never so far. I encourage others to sign up too.

Thank you, I really appreciate it

It's an excellent and important thing to do.

New parents can also donate cord blood at some hospitals which can also be used to treat blood cancer.

Thanks for highlighting it, OP.

Unfortunately the age limit is 55

I have just registered

Registered a couple of years ago.

I have registered, hope I can help someone if needed

I'm on the Anthony Nolan list. Does it widen my chance of being needed if I register for this list as well?

I just tried to register and the age limit is 55.

Hmmm, I genuinely thought it was 61🤔 my apologies!

This one has a higher age limit than Anthony Nolan. Do it, it's so easy!

Just went to sign up but as I thought having RA takes me out of being eligible to donate. It’s the same with regular blood donation also.
Does anyone know why illnesses make you illegiable? I could understand if it was a blood illness but I don’t understand why others are excluded

I've done it too, fairly recently. There was no acknowledgment of the swabs being received, but they did send one before I'd posted them reminding me to post them. I hope they got them okay, anyone any experience?

If you’re registered with Anthony Nolan then you don’t need to register with dkms too.

If you are a blood donor, you can join their registry at your next donation.

My questions are:

• what do they do with the swab? Do they sequence the dna or simply check for markers? Who has access to that data, where and how is it stored and for how long?
• Has any research been done into the effect on the donor of having injections to increase the production of stem cells prior to collection?
• Is it possible to say OK to the blood donation type but no to the one where they collect from the actual bone? The Anthony Nolan register says you have to be happy to do either.

@RolytheRhino

Those are all excellent questions. Have you thought about emailing them about it?

Also, loads of your questions are actually answered on their website.

I’m too fat unfortunately.

The person who picked up the phone couldn't tell me because they didn't know. I take it you don't either- fair enough.

Is it the same as the blood donor one? I'm on that so don't want to waste time and swabs if so.

Fine.
Swab is for HLA testing, which is what they need as they only seek immunological compatibility, not a DNA match.
The organization's has the access and the national network. It is stored anonymously, ie your sample is matched to your number, not name. It is stored on a TRAK system without an outside server and kept until your 61st birthday then deleted.
Yes, extensively, on both long and short term effects. The monitoring bodies were satisfied it met safety standards. Please feel free to use Google scholar to verify it. Most commonly it includes bone or kidney pain from over stimulation, but you could also develop allergy like symptoms.
The doctor performing the procedure can't go on without your consent, so if you're unhappy about either of the procedures, you have the right to withdraw.
Happy?

Lannisterlion, it's not, this is immunological matching.

@TripleSeptic I volunteer with DKMS. It does take around 8-12 weeks for the swans to get sent off and processed so hopefully you are still within that timeframe.

If not please drop them an email to see where they are at.

And thank you so much for doing the swabs!

@scattercishion17

Thank you for that info, that's something I didn't know.