Aplastic Anemia
 

My daughter is 16 and a IB student in the 11th grade, 4.8 GPA and is a scholar athlete in softball. She was diagnosed with AA in July 2015. We went from some what a normal everyday life to trying to learn what AA is all about.

She has been going to the hospital 1 to 2 times a week since. She has had the 4 day ATG treatment and is now on meds 2 times a day.

She has a great awesome attitude. She know this could be a lot worse and is thankful everyday that its not. She is now a home bound student right now and cannot play any sports right now. She has had a total of 34 platelet transfusions and about 17 blood transfusions. This has been very tough on us as parents and our 9 year old son. We all have our ups and downs and sometimes we all our frustrated but know that she has not gotten worse. It seems some weeks she take 2 steps forwards and the next week its 1 step backwards. We pray a lot and ask god to do his will.

Any advice anyone.

Check out:

www.aamds.org

Talk to the patient educator and attend one of the patient family conferences.

rprice,

It sounds like your daughter is getting the right care. I hope you're working with doctors who are aplastic anemia experts. They can guide your daughter's treatment as she gradually gets off the current medications. Luckily, teens usually respond well to AA treatment.

Aplastic anemia is rare, but there are other families going through the same thing with a child of a similar age. You can look for them in these forums, at patient conferences, through your treatment canter, or ask the AAMDS if they can connect you with someone in their Peer Support Network.

Social connections are very important at age 16 and a good friend may provide a type of support that doctors and family can't provide, at least not in the same way. Your daughter may be feeling isolated from friends and it's important to try to correct that. Look for opportunities for your daughter to explain what's happening to friends and former classmates and teammates, and especially to see them in person. You've learned about this disease but it's mysterious to most other people. For example, you know that you can't catch aplastic anemia by being around a patient, but unless someone explains that, her friends may not realize it. It's the first worry that friends often have.