Josephine giandalia
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I will share my story of my son who started hydroxyurea when he was about 20 years old. Before that he was getting packed red blood cells every 3weeks since he was 5 years old. The decision to start hydroxyurea was easy for us since he was having crisis very often. His side effects were headaches and nausea. The upside was that his fetal hemoglobin shot up to 25 percent!
He is now 45 and doing reasonably well. He also in addition started Oxbryta (not sure of spelling). The side effects of these new drugs stomach/nausea, are always an issue. He has not had a crisis in 3 years. But we have to weight the upside/downside.
God bless you and your loved ones.
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Hello: my child is a grown man of 44years old. He has suffered very much in his lifetime. I have also alongside him. He has been in a routine of blood exchanges most of his life, which has helped, and hydroxyuria. His biggest complaint is the aseptic necrosis in his hips. Walking is very painful and surgery is risky. I pray daily for his well being and a miracle. Thank you for allowing me to share.
Bless you
Josephine Giandalia
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I am a mother of one who has sickle cell…and Caucasian. It has been extremely lonely for my son.
He has lègs-perthies…where his hips are worn away from the sickling. Needless to say, he is in pain most of the time and very difficult to walk. So it’s mostly the isolation that is the hardest part.
Thank you for letting me partake in the discussion. God bless you all.
josephine Giandalia