Nearly 40% of rare disease families borrow money to pay medical bills. Legg Calve Perthes, a rare childhood disease, is triggered by a loss of blood supply to the hip, and produces a painful limp and chronic inflammation in the joint. Many children require surgery and equipment in order to heal. As adults, they are prone to degenerative osteoarthritis. Chronic pain, potentially lasting from childhood into adulthood.
It's been over 100 years since we've known about Legg Calve Perthes disease, but still lack answers and a cure. A worldwide problem, yet there is little awareness or financial aid to assist children. Perthes is a long and painful process. Many families face the expense of surgeries, equipment, & travel for treatment. The challenge is to bridge the gap between the lack of funding for research, while aiding impacted families. Both are critically important. With your help, we can change lives.
Starting in late 2017, Perthes.org was created to provide education, annual conference, and a patient registry for future research. The life cycle to Perthes is long; finding a diagnosis, doctors' appointments, surgical costs, expensive medical equipment, pain management, & physical therapy over many years can be costly. This project will fund the 2019 Assistance program for 10 families who apply and qualify.
In our lifetime, we would like to see a cure for Perthes Disease. Every child should be able to feel the joy of running and jumping without consequence or pain. While we have our eyes on a cure, it will require time and resources. In the meantime, our goal is to help alleviate the burden and cost of managing a rare disease. Consider opening the door for families who need equipment for their children, while laying the groundwork to help develop a cure.
