The active and adventurous Devaney Mehl was sidelined by excruciating pain when only 28-years-old, originally reported in Regina Leader-Post. After many incorrect diagnoses, she later learned she had developed the rare disease loin pain hematuria syndrome. This is devastating news for anyone, especially Mehl who was always rock climbing, hiking, swimming and taking on any adventure that came her way. Yet, the lower back pain she developed was crippling, leaving her even unable to embark on anymore adventures, let alone work or even wash dishes at home.
Loin pain hematuria syndrome, LPHS, is a rare disease affecting the kidney and it that impacts roughly 13 out of every 100,000 individuals. It’s extremely rare, and unfortunately there isn’t much knowledge on the cause of the disease or treatment for it. The treatment options are limited– too many painkillers can be limiting and dangerous, and the removal of ones kidney, while possible, has its fair share of cons. Dr. Kunal Goyal, an interventional radiologist, believes artery denervation might help alleviate the pain, but unfortunately, nothing has been developed to eliminate it completely. To learn more about LPHS click here.
The procedure doctor Goyal performs uses a machine to redirect and stop nerve impulses from the kidney to the brain. While it’s often a successful procedure, it can only help aid an individual for six months to a few years. As soon as the pain resurfaces, they have to perform the procedure again. Dr. Goyal’s team has treated about nine patients in the last couple years and found success, yet the technology needed to perform the procedure is not approved in Canada, which is a process and often takes time.
Loin pain hematuria syndrome is sadly another rare disease that flies under the radar because of lack of knowledge, yet that doesn’t make it any less debilitating or painful for the patients than other commonly know rare diseases. To continue doing these mildly successful procedures, and of course more research to learn more about LPHS, there needs to be more funding and that all starts with more awareness.
For now, when Mehl undergoes her procedure she can live a normal life. She’s back to traveling, working part-time and, yes, even doing the dishes. Sometimes it’s the little things that matter most. Unfortunately though, until a better treatment is discovered, Mehl will have to continually have this surgery to keep her afloat.
