LAUSR

I have two sons with Sickle Hemoglobin E Disease (SE). They are caucasian-hispanic, both have a baseline hemoglobin in the 11–13 range with low reticulocytes, and yes, both have complications from chronic pain, vaso-occlusive crisis, and acute chest syndrome, to priapism, executive dysfunction, tissue damage, and silent stroke. Both of my sons have been followed by a hematologist on an annual basis, never prescribed prophylactic penicillin, never undergone a transcranial doppler (TCD) scan, have never needed a blood transfusion, and are not good candidates for any of the four medications currently on the market for the treatment of Sickle Cell Disease.