Posted by: shirish June 3, 2005
help mr. baniya's kids
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Dear all I sympathize with the parents and the kids. I am willing to contribute for the benefit. I do have some concerns. 1. The disease is not treatable at least the root cause because of the autosomal in nature. The key here to improve the quality of life by preventing future fractures. If 100,000 plus if spent on this patient (and I understand the agony of the patients and the parents) what is the prognosis? 2. Dr Banskota and Dr. Shah and others say there is no treatment available: "Prof. Dr. Ashok K. Banskota, M.D; F.A.C.S. (Chief of Orthopaedic) of B & B Hospital, Kathmandu, Nepal and Dr. Ram Kewal Shah, (Chief of Orthopaedic) of Nepal Medical College advised us to treat both children outside Nepal as treatment is not available. We went to Sir Ganga Ram Hospital, New Delhi (India) and Dr. V.T.K. Titus, M.S. (Ortho) of Christian Medical Hospital, Vellore, (India) and found that India is not equipped to treat OI disease. Did few more inquiries and consulted other countries doctors through Net, websites and found Kennedy Krieger Institute (Johns Hopkins Hospital), Baltimore 707, USA, can do surgery and treat my children. Dr. Jay Shapiro, MD, of aforesaid hospital gave us the appointment of 11/07/2004 which was later postponed to 12/15/2004 due to Visa obstruction." What surgery is going to be done? Surgery can correct the current deformities but I don't think it is the treatment. The key again is the prevention of future fractures and increase the quality of life. 3. What about other Nepalese who do not have the previledge of access like Mr. Bania? Are we going to think about them too? Tell me if I look insensitive to these unfortunate children...I am just trying to be realistic.
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