What You Should Know
A diagnosis of Legg-Calvé-Perthes syndrome can be overwhelming, but the journey doesn't have to be -- especially when properly informed about the condition. These resources will help one be armed with the strongest weapon against Perthes: knowledge.
PARENTS of children with perthes
When a child is diagnosed with Perthes disease, it is perhaps scarier for the parent than it is the child. While the condition is indeed a serious one, fears can be eased by getting familiar with what exactly to watch out for and expect -- and by getting familiar with other parents and families coping with, navigating, and surviving the same situation.
THE PARENTS’ GUIDE TO PERTHES BOOK
Perthes Kids Foundation is proud to partner with Betsy Miller and Thinking Ink Press, author and publisher of The Parents’ Guide to Perthes: Understanding Legg-Calvé-Perthes Disease. This book is one of the firsts of its kind, and has been required reading for the past several years for parents new to Perthes disease, as well as, the experienced. The book contains invaluable and easy-to-understand information, from first symptoms and diagnosis, to various treatments and healing.
If you are a parent who’s child has recently been diagnosed with Perthes, it can be quite overwhelming. The Parents Guide to Perthes will help you understand what it all means, and what your next steps should be. You can now download a free copy of the first chapter by clicking on the button below. A special 50% OFF discount code for the entire e-book download, is also available until November 1st, 2018. Just use our promo code “PERTHESKIDS” and save.
adults with perthes
Every adult with Perthes was once a Perthes Kid. You understand more than anyone on how the challenges of this disease not only reshapes your hip, but also helps shape your life. Again, Legg-Calvé-Perthes disease is not life threatening, but it is life altering. Children faced with the limitations and patience needed to progress with Perthes, usually turn out to be good, outstanding adults, that can go on to do amazing things, despite their earlier condition.
PKF encourages any adult who had Perthes as a child, to give back and help make a difference for the kids going through Perthes right now. Please consider sharing your story in one of our social media groups, making a donation, becoming an advocacy volunteer for our organization, or a volunteer at one of our camps. Most adults with Perthes have never met anyone else with Perthes, so volunteering at Camp Perthes is not only inspirational to the kids, but it can also be very emotional and therapeutic for the adult. To learn more about volunteering click here.
Want to help with Perthes research? We invite you to participate in the ADULT PERTHES SURVEY from the International Perthes Study Group. Our goal is to have over 1000 adults who were diagnosed with Perthes in their childhood, to fill out the survey so we can learn about how you’ve been doing since your diagnosis and earlier treatments.
perthes doctors, TREATMENTS & research
While education and mental preparation are important, the ultimate key to living with and surviving Perthes disease is receiving the proper treatment from a medical specialist. Learn more about the journey of every Perthes patient over the years and that of the condition itself since its initial discovery.
the international perthes study group
The Perthes Kids Foundation was invited to participate in the 2018 International Perthes Study Group Conference in Dallas, TX, USA. We gave a one hour presentation to provide important insight to some of the top orthopaedic surgeons in the world, on a perspective of Legg-Calvé-Perthes disease they rarely get to hear. In addition to the X-rays, MRIs and science behind Perthes, the heart and soul of this disease, will always be the children & adults who actually go through it. That is why we do what we do, in working together, to hopefully one day find the cause and a cure for this painful disease.