Hello, folks. My kid has been diagnosed with rickets. As far as I understand, it is a certain inherited form. I would like to know if anyone has any suggestion for support group for people who are dealing with this kind of disease. I would really appreciate if anyone could answer me.
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Hello. I have heard about inherited form of rickets. It is also known as X linked hypophosphatemia. In this disease, kidneys are not able to retain phosphor. I admit that this is a rare disease. There are support groups for this kind of disease. I know one in Malnius, NY. You haven’t mentioned where you live. I guess it isn’t a problem to find a support group in a bigger city. Good luck!
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What type of rickets is it? Vitamin D resistant or Hypophosphatemic? My son has Vitamin D resistant rickets, meaning his body is unable to convert the active vitamin D to the inactive Vit D that is stored in the bones and keeps them strong. He wasn't diagnosed until age 2 and is now 10 years old and as a result, has had numerous leg surgeries. Happy to talk with you and share my experience. I know it's difficult to find others with similar problem as it is a rare hereditary condition.
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