Resources

This page is a work in progress, as I plan to keep it updated as I find more resources on LCPD. If you know of any great websites, articles or publications on Perthes, please let me know!


 

The International Perthes Study Group is a group of 45+ pediatric orthopedic surgeons and researchers with the common goal of advancing knowledge and care of patients with Perthes disease. It is reassuring to know that there are doctors out there who specialize in Perthes and who want to help advance the research of this disease.

One of the most comprehensive studies I’ve been able to find online is entitled The Epidemiology and Demographics of Legg-Calvé-Perthes’ Disease, by Randall T. Loder and Elaine N. Skopelja, published in the International Scholarly Research Notices Journal in 2011. It is clear that an incredible amount of research went into the study, and there are a wealth of other resources (links to other articles) listed in their citations. Their breakdown of the incidence of LCPD in different countries and races is particularly interesting. The incidence of LCPD varies widely depending on where you’re from, and what race and socioeconomic class you’re born into. One can only wonder why. The fact that the “etiology” (cause) of LCPD is unknown is one of the most frustrating aspects of living with this disease.

The National Organization for Rare Disorders (NORD) has a great report on Perthes, located here: Legg Calvé Perthes Disease.

I love this blog post on The Mighty by a fellow Perthes survivor named Annemiek Steur: How I Can Play an Intense Sport When I Have Trouble Walking. She captures the struggle perfectly, and it’s a great reminder that those of us living in the aftermath of Perthes have a story to tell. We are in pain, we have memories of childhood suffering, and there is very little we can do until that all-too-inevitable future hip replacement.