Did you know there have been many different names used in the medical and scientific community before its present iteration of X-Linked Hypophosphatemia?
It has also been called :
- X-Linked Hypophosphatemic Rickets
- Familial Hypophosphatemia
- Familial Hypophosphatemic Rickets
- Vitamin D-Resistant Rickets (VDRR)
- Genetic Rickets
This can be a barrier for people looking for peer support to find each other in our community. In the case that the name of the disease has changed since your diagnosis, especially in situations where individuals haven’t been receiving regular care with an informed specialist, it becomes difficult for people to connect to this community.
There have been significant advancements in research and access to new and innovative treatments in Canada in recent years, and these areas are still continuing to develop. For those people who were diagnosed when there were not many options for treatment, it can be discouraging to continue seeking new alternatives. Adding to that, the fact that XLH has been known by many different titles over the years, it may be more difficult for those people to become aware of new and developing treatment options.
As we grow our Canadian XLH Community, we hope to close that gap, and allow people with XLH, regardless of when they were diagnosed, to find the care and connection they deserve. What was XLH called when you were diagnosed? How did you find the Canadian XLH Network?