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Is Steroid The Only Option For Diaphyseal Dysplasia And To Have Normal Haemoglobin?
Dear sir, Ten month back we have adopted a baby boy of 07 month old. now he is 17 months. when we adopted he was having severe anemia (his Himoglobin level was 7 Later our peditrician gives iron supplements and Himoglobin was raised to 8.8 after that we stoped the iron supplements now his Himoglobin is less than 6. we consulted many more specalist they are telling child is having iron deficiency and bone density poroblem.this bone problem is due genetics.bone marrow is getting less space due to excess bone and excess calcium deposition. child looks normal, trying to walk, speak very social , .now the doctor is advising us to give steriod . they are telling his himoglobin will be normal after steriods. His bone problem is disphyseal displasia . a rare bone disorder. in the long run steriod will cause major health problem. no other english medicine is there in the world .only 100 cases are there in history. reagrds xxxxx
Hi I have read the details posted by you and diagnosis is clear diaphyseal dysplasia( Engelmann Disease) . It is a rare disorder and treatment is only low dose steroids + Correction of skeletal deformities at a later stage. You can get help from" https://rarediseases.org/organizations/nihnational-institute-of-arthritis-and-musculoskeletal-and-skin-diseases/" and some clinical trials which are undergoing for reaearch .
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Is Steroid The Only Option For Diaphyseal Dysplasia And To Have Normal Haemoglobin?
Hi I have read the details posted by you and diagnosis is clear diaphyseal dysplasia( Engelmann Disease) . It is a rare disorder and treatment is only low dose steroids + Correction of skeletal deformities at a later stage. You can get help from https://rarediseases.org/organizations/nihnational-institute-of-arthritis-and-musculoskeletal-and-skin-diseases/ and some clinical trials which are undergoing for reaearch .