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When I was 32 I had a sudden cerebral spine fracture, I was diagnosed as having severe Osteoporosis(I was told my bones were like that of 80 year old); The doctors didn't bother much as I was living with Achondroplasia (Dwarfism) and they attributed everything to it.

I'm on bisphosphonate treatment (zoledronic acid), I've already had 5 of those injections and I recently learnt that it could lead to severe side effects and not that effective for treating Osteoporosis.

Meanwhile I underwent a genetic testing and the result came out as I have COMP8 mutation which leads to Multiple epiphyseal dysplasia or Pseudo-achondroplasia; Both of which affects bones to different extent and I have symptoms for both.

I'm now looking for treatments which can help improve my bone density or at-least prevent further deterioration, CCN3 looks really promising. I even started a project to monitor bone health using BMD (Dexa) reports[1] and to submit reports for research (I'm looking for researchers in this area).

1 in 3 women over the age of 50 years and 1 in 5 men will experience osteoporotic fractures in their lifetime, According to this article more than 200 million people worldwide suffer from osteoporosis but I feel investment in bone health research is not enough.

[1] https://bonehealthtracker.com/




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