im a rarity when it comes to mds

[henry.s]

hi guys my names henry im 16 and i have been diagnosed with prelukemia (mds) i am one of the very few people who get mds at a young age. ive got two questions for those willing to help: 1st question- with my diagnoses, from all the bone marrow biopsys i have had and countless other tests done ive got no abnormalitys in the chromersomes, the only factors are with the rbc count continuosly dropping (transfusion dependant) and my retics never getting higher than 20. this has been going on for about 1 year now (all the tests) is this enough to get a diagnoses? .... 2nd question - any heads up on the transplant?

[evansmom]

Hi Henry,

First off, sorry to hear you have bone marrow issues. Secondly, good for you for being proactive about your disease and seeking information and educating yourself. Despite your young age, you are making very mature choices. You will find Marrowforums an excellent source of support and information. I certainly did when my son went through treatment and BMT for his aplastic anemia 4 years ago.

It is not good to be transfusion dependent as your immune system develops antibodies with each bag of red cells you receive. This may complicate treatments down the road. However, in the short term, it's what you need to feel well.

When you say it's only the red cells that are affected, you therefore have a normal platelet and white blood cell count? There are no blasts in your marrow or blood?

Is there any chance this could be pure red cell aplasia?

You will need a definitive treatment plan that may include a BMT. You are young and otherwise healthy, so the sooner, the better. A wait and watch approach would have been OK if you weren't transfusion dependent, but since you are, time is of the essence here.

When were you diagnosed? How many transfusions have you had so far? What have the docs found to tell them it's MDS for sure?

[triumphe64]

I agree with evansmom. I have PRCA. It is very rare, and they tend not to look for it. It is much easier to treat than any of the other illnesses you will read about on this board. Sometimes it is a symptom of something else that is easily cured.