I am newly diagnosed and wondering whether there are any other people with aplastic anemia?

hey Ive had aplastic Anemia for about 3yrs. ive had so many blood transfusion,but im waiting for a bone marrow transplant

Hi Ebony,
Its great to hear from someone else with AA. They aren't many of us out there, so its always great to hear from someone else with the condition.

You mentioned that your waiting for a transplant. I assume this is an unrelated donor. Have they found a match?

I was diagnosed with AA in July 08 and treated with ATG (Horse), cyclosporin and prednisolone. Until a few months ago I was still on high dose cyclo (400mg per day) but they're now trying to get me off it to see if I can keep my levels up. I'm now down to 150mg per day. fingers crossed that my levels stay up, otherwise I'll be heading for a unrelated transplant also. I've got 3 brothers, but unfortunately we're all different, so they're no good to me... well not for a transplant anyway.

Take care, take it easy and good luck with the transplant.
Cheers,
Tim.

Hi thanks for the email. they havnt found a match for me yet,no one in my family is a match.So atm im waiting for my iron levels to come down. They are above 1000. Its too dangerous to have a bone marrow transplant when my levels are that high.So i take EXjade to lower my iron. Its getting to the point where the blood transfusions arnt working, im feeling more tired,I cant go out much cause, i run out of energy. Im meant to be going out having fun like any 21 year old. Im abit scarred of having a transplant and losing my hair

Hi Ebony,

I'm sorry to hear of your high iron levels. In regards to the transplant and loosing your hair, it sounds bad (particularly for a female) but if it makes you better and you can get back to your old life again, its well worth it.

Hang in there and good luck with international search.
Tim.

Hi Tim and Ebony,

I have PNH, which you may have heard of, it's very rare like AA. Some AA patients develop PNH and vice versa.

With some other PNH patients (at least one of whom also has AA), we have recently formed the PNH Support Association of Australia. Our first official meeting is in Melbourne next Thursday evening. We hope to also support patients with AA and MDS. You are more than welcome to attend if you'd like, just shoot me an email at This email address is being protected from spam bots, you need Javascript enabled to view it and I can provide details.

We are going to establish a website but in the meantime we are setting up a Google group to enable discussions, interact and give each other support. If you cannot attend the meeting you can still participate and become a member of the Association if you wish to. The more patients we can connect the better for all of us I think.

It would be great to hear from you.

Cheers
Linda Charlton