One of the things about the XLH community that both scares me and also gives me hope is that doctors aren’t immortal.
It scares me, because a lot of the well-known experts are retirement age, so as much as we’d love to have them treating us and sharing their insights with other clinicians forever, that’s just not going to happen. Add to that the destruction of the National Institutes of Health here in the U.S., and along with it, most of the funding for rare disease research (and the restrictions on loans for medical school), and I can’t help worry about all the MD and PhD candidates who might have made breakthroughs in XLH treatment, or provided outstanding care to rare disease patients, but instead are discouraged from pursuing a medical career for financial reasons.
I still have hope for our future though, because new health care providers are coming of age (as seasoned clinicians and researchers), and are standing on the shoulders of the retiring giants, taking that hard-won knowledge in new directions. Dr. Karl Insogna has retired, and I will always miss him, just as when Dr. Thomas Carpenter retires, I’m sure pediatric XLHers and their caregivers will miss him. Neither of these amazing clinicians can be perfectly replaced, but I was pleased to meet the new doctor at Yale who will be responsible for much of the same type of work for the XLH community there. You can read about Dr. Peter Tebben at the Yale website. I think you’ll be impressed by his credentials, and I can attest to his caring bedside manner!
You may have also noticed that several of the articles I’ve discussed in the last year (in a positive light!) come out of the Vienna Bone and Growth Center, where orthopedic surgeon Gabriel Mindler and his colleagues are doing interesting research into XLH bones (and also other rare bone disorders like osteogenesis imperfecta). While I haven’t met Dr. Mindler or his colleagues in person (I’ve been dreaming of traveling to Vienna someday, even if it’s not likely to happen), we’ve corresponded, and I’ve been impressed by how well he listens to patient advocates about the lived experience and absorbs what we tell him.
There are other examples of outstanding health care providers in the rare bone community, but those are the two that came immediately to mind. I’m also encouraged to hear that many (not all; there’s still work to do) new clinicians, especially those straight out of residency, are much better at listening to patients than their predecessors are. I’m hopeful that someday these clinicians won’t be the exception to the rule, but will be common, and patients will no longer be expected to just sit and listen to the godlike wisdom of clinicians, even when the advice is entirely wrong!
What about you? What are your fears and hopes for the health care providers to the XLH community?
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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