I am 36 and I am having a baby this month. For stem cell treatment in the future, for me and not for the kids, they don't have the ALD gene, is it worth to save the cord blood or the tissue cord?
For my first baby I saved the cord blood and now they offer the tissue as well!
Are you a carrier?
Yes, me my mom and several cousin and aunts!!!
My kids are not!
Did you get my reply from today? (8th of Jan 2016 ) I seem to have mucked you around very badly and I did not mean to. My email is bobwyborn@bigpond.com if you want to make direct contact. I can and will help you but I need to know where you live so that I can confirm what that country's policy is. Please forgive me for losing your email and not responding much sooner. I would be somewhat annoyed at someone who answered you then fell silent. You sound a great Mum and very caring person.
I am so happy to hear that your children are ALD free. I can send you the latest info, support etc. on female and male AMN. Please let me know and I apologise to you again. I live in Queensland Australia and I am well up on ALD and the global activity which I can direct to wherever it is that you live.
4-AP, what’s people’s experience of it? Does it work? How can you get it and what does it cost?
Men 32, high vlfca levels
Therapeutic Plasma Exchange
Urinary Urgency: life becoming intolerable
