[jmlmowery]

Hello-
I am new here and have read a lot of the messages regarding MDS and Aplastic Anemia. I am totally sympathetic to all of your problems. I guess I want to introduce you to another rare disease which causes bone marrow failure. It is Shwachman-Diamond Syndrome. A child is born with this disease which invloves the marrow not producing enough white blod cells and may also not produce enough red cells or platelets. There are other physical problems which also affect the patients. But the bottom line is that it is the marrow which will fail. The patient can be a year old or 50 years old but at some point they will either develop leukemia, MDS, or aplastic anemia.
Years ago, patients did not live into adulthood but with improvements in medical science they now do.
We need a place to share are concerns--many of which are exactly like yours and we hope we can feel welcome here.
Joan