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My name is Kristin Short & I have a rare Bone Marrow disease called Diamond Blackfan Anemia, diagnosed at three months old. My bone marrow is unable to make the red blood cells that the body needs. I am red blood cell transfusion dependent & have been since April of 1990, because I have been getting two/three units of blood every two weeks, I now have what is called Iron overload.
There is 300mg of Iron in each unit of blood & the body is unable to remove it itself. There is only two known medications that can remove the iron. Desferal that is IV or long nightly infusion under the skin known as SubQ or Exjade that is a daily pill desolved in water, apple juice, or orange juice to drink.
Because of the iron overload, I am unable to work & need to start aggressive treatment for the iron with being in & out of the hospital. I was also diagnosed with Congestive Heart Failure (CHF) & Ventricular tachycardia arrhythmia (VTach).
There is 300mg of Iron in each unit of blood & the body is unable to remove it itself. There is only two known medications that can remove the iron. Desferal that is IV or long nightly infusion under the skin known as SubQ or Exjade that is a daily pill desolved in water, apple juice, or orange juice to drink.
Because of the iron overload, I am unable to work & need to start aggressive treatment for the iron with being in & out of the hospital. I was also diagnosed with Congestive Heart Failure (CHF) & Ventricular tachycardia arrhythmia (VTach).
Organizer
Kristin L. Short
Organizer
Orlando, FL
