Niece with severe aplastic anemia

[MICHELLE]

hi! my niece ruby jo was diagnosed with saa in feb. 2011 me and my family are having ahard time with this she has never ben sick in her life she looks like a diffrent child i can go on and on but anyway this disease is so rare can someone out there please help!!! i hate the computer sorry.

[Karenish]

Michele firstly sorry for your neices diagnosis! it comes as a great shock to all of us, and all of us like you had never heard of it until it becomes your reality. If she is young they will probably want to take her down the bone transplant option, these are improving every day and no doubt your doctor will discuss it with you.
The other treatment is ATG/ALG which is basically rabbit serum which has human antigen being put into your system over a period of 5 days while you are in isolation in hospital (I have just had it and waiting to see if it works) for me it was not unpleasant, bit like flu for one night and a couple of rashes, but these soon went with piriton, the most annoying thing for me really was the hickman line being put in and the shear boredom of staying in isolation for 5 weeks!!! BUT there is a 70 - 80% chance of it improving your blood counts. It isn't a cure as such, but some people go into complete remission for the rest of their natural lives! so as good as a cure I would say. All of this should be discussed with your doc. Write down your questions before you go in to see them is my advice, and, where the computer is a good source of info, not all of it is true, you will also read some horror stories, which I expect are a bit like stories of ladies giving birth, they can be a bit embelished and of course every single one of us is different. It is not a nice diagnosis, its one I would rather not have (I am 51 and have just embarked on a wonderful new career, moved to a new area, fallen in love with a wonderful man......) it has come totally at a time when everything I ever wanted was in place. BUT it is not going to change me, I will just have to adapt i.e. being very mindful of washing hands, and keeping away from bugs etc. until of course I am in complete remission (grin) positive thinking always helps. Good luck, it may seem like the end of the world, but for lots and lots of us, it isnt. xxxxx

[Neil Cuadra]

Michelle,

I suggest that you contact the Aplastic Anemia & MDS International Foundation and get their free booklet named Your Guide to Understanding Aplastic Anemia to share with your family. It's an excellent overview of the disease and its treatments. You can also phone the Foundation to ask questions. You can connect with other people facing similar situations here at Marrowforums or by taking advantage of the Foundation's Peer Support Network.

Children tend to have excellent responses to the treatments Karenish mentioned. Nobody wants to go through medical treatments but most kids take it in stride and go right back to being kids. Aplastic anemia is rare but Ruby Jo might like to know that Eleanor Roosevelt had the same disease she does. Back then, doctors didn't know how to cure it or treat it effectively. Now they do.