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Lately, the online patient support group I am part of, the XLH Network — short for X-linked hypophosphatemia, the genetic illness I and two of my children share — has been blowing up with news of a soon-to-be-released treatment that could very well amount to a cure.
KRN23 is a recombinant antibody that restricts excessive production of a hormone that prevents people with XLH from absorbing phosphorus, leading to our short stature, crooked legs, poor teeth and other symptoms of our type of dwarfism. Ultragenyx, the company responsible for KRN23, has carried out adult tests with no ill effect. Pediatric tests are still underway, but this looks like the real deal. This could truly be a cure. It is hard to explain to anyone who does not have a condition like mine why this feels so bittersweet. But it does.
When Eliza, my youngest child, was born, she was in a neonatal intensive care unit in Albuquerque for three weeks — not because of XLH, but because my husband and I also possess a rare blood incompatibility. My son, born...