What is Perthes disease?
MEDICAL DESCRIPTION: (1) Legg-Calvé-Perthes syndrome is a degenerative disease of the hip joint. It is a rare condition of the hip bone that affects only children (4 or 5 per 100,000, usually one hip, but can affect both - bilateral), and is characterized by a temporary loss of blood supply to the hip. The lack of an adequate blood supply causes the head of the femur bone to die, leading to some degree of collapse of the hip joint and to deformity of the ball of the femur, and the surface of the hip socket. There is new bone regrowth after the disease runs its course, but the degree of previous damage to the hip can cause some pain well into adulthood.
(2) It is a chronic inflammatory necrotic bone disease and idiopathic avascular osteonecrosis of the capital femoral epiphysis of the femoral head, coxa plana, caused by an interruption of the blood supply of the head of the femur close to the hip joint, which then leads to chronic pain and imbalance. The disease is typically found in young children (4 out of every 5 cases are boys), and can lead to osteoarthritis in adults.
SHORT DESCRIPTION: Perthes disease is a rare childhood condition that affects the hip when blood supply to the hip bone is disrupted, causing bone cells to die, which erodes the hip and causes pain in the process.
There is no known cause for the disease, and currently, there is still no cure. It is treated in various ways from hip surgeries, fixators, leg braces, petri casts, wheelchairs and walkers. This can be quite devastating to young children as it can cause much pain, both physically and emotionally, from not being able to run, jump or play like most "normal" kids. The uncertainty can also be quite frustrating to parents, as they are often told to "wait and see" how the disease progresses, before most doctors can figure out how to best treat their child's condition. The debilitating effects of Perthes can sometimes continue into adulthood, limiting some physical activities, and can eventually lead to the need of a total hip replacement.
While Legg-Calvé-Perthes disease is not life threatening, it is certainly life altering, with restricted mobility in a child's daily life as something to be endured, instead of fully enjoyed. The emotional pain from Perthes can be just as overwhelming as the physical. However, our spirited Perthes Kids, are every bit as brave and inspiring as any heroes seen on TV or in the movies.
"Perthes can't stop me, I can still fly." - Perthes Kid
PERTHES KIDS FOUNDATION was originally established in 2007, by CBS Survivor: Fiji Winner, Earl Cole, in partnership with the University of Kansas Endowment Fund, as the Earl Cole Fund for Perthes Research. In 2015, Perthes Kids Foundation became an independent, non-profit organization, 501(c)(3), solely dedicated to Legg-Calvé-Perthes disease. Cole was diagnosed with Legg-Calvé-Perthes Disease as a child and founded this charity to help raise awareness, funds, further research, find a cure, and connect others dealing with this rare hip bone disease. With a combined social network of 20,000+ strong, Perthes Kids Foundation is the leading organization dedicated to a growing community of parents, kids, doctors, family members and adults with Perthes, from all over the world, working together to take action, advocate, educate, and support each other, as we fight this disease.
Perthes Kids Foundation has a mission to make an immediate, positive impact, on the lives of children diagnosed with Legg-Calvé-Perthes disease. Our work has been featured in various media outlets, such as CBS, FOX, People magazine, GOOD magazine and Yahoo! News. We are also co-producers on a film documentary (Crutch, 2019 release date) about a world renowned artist & skateboarder with bilateral Perthes disease, that features our USA camp and some of our Perthes Kids. We encourage visitors of this website to share and/or donate to our cause, in helping children and adults, dealing with the pain of Perthes disease. All donations are tax deductible (Federal Tax ID: 47-3841121).
New Perthes Kids Fly Free Program
Perthes Kids Foundation has recently formed a partnership with Miracle Flights, to provide free flights for kids with Perthes disease to attend Camp Perthes USA & visit Perthes doctors around the country! See the national press release here:
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.
As the disease's impact stretches far beyond the bodies of those challenged by Perthes, to the hearts and minds of the entire family as well, Perthes Kids Foundation (PKF) is doing its part in not only bringing awareness to the disease, but also offering support and a plan of action to those families, by connecting and building them into a larger global community online, and in real life.
thousand dollars raised
Due to the generosity of corporate sponsors and individual donors, we have been able to provide customized activities and memorable events for Perthes. We have even bigger fundraising goals in 2019, to do even more good works in helping kids and parents dealing with this disease.
years of service
We have been serving and contributing to the Perthes community since 2007, having decades of life experience with the disease. Our passion to raise awareness is authentic, with a rich history in directly impacting the lives of children and adults diagnosed with LCPD.
thousand followers reached
With a combination of social media and other digital channels, our network has grown exponentially through the years, giving us access to a wide range of people and Perthes supporters across the globe.
dedication in supporting people dealing with perthes, every day
Whether organizing events and programs such as our long-running camps, continually raising awareness and funds for Perthes research and education, or connecting with children and their families one-on-one, Perthes Kids Foundation is committed to helping, collaborating and supporting the entire global Perthes community in all aspects, from every angle. We fully understand what you're going through and are here to serve.
“It certainly doesn’t take long for these kids to grow up, however thanks to you (PKF) our son has met and made lifelong friends who are just like him. I don’t know if you will ever understand what a huge difference you made in both our lives, we are forever grateful.”
— Lisa, Perthes Mum
"One year ago today...the reality of Perthes hit me like a ton of bricks...I saw such anguish in my son's face...such a milestone in our journey. Thank you to God, our doctors in Maryland, our physical therapist here in Liverpool, all our families, friends (near and far), neighbors, even strangers who have said the kindest words of encouragement in helping us put a smile back on Riley's face once again. One year ago today... is a day that will always haunt me, define me, but more importantly remind me of the strength and courage it takes for some to survive."
-- Candice, Mother of a Child with Perthes Disease
“I have Perthes disease. Many surgeries and lots and lots of physical therapy and blood, sweat and tears. I don't feel sorry for myself either. not one of my friends know I have it or what I went through to get where I am. most of my friends think I am a wild man and dare devil. I used to bring in gold medals to my orthopedist from wrestling every visit. Usually right before going into surgery. I spent many summers/falls in a body cast and on crutches. Wrestling really helped me win back some confidence that was stripped from mean kids on the play ground. If you have Perthes don't ever give up on yourself…You can climb any mountain if you got the guts. Keep up the fight!
— John, Adult with Perthes & Extreme Athlete
"When my son was diagnosed with Perthes, like many families, I immediately went to the computer to google all of the information that I could find. That is where I discovered the Perthes Kids Foundation. I was so excited to find a resource that I thought would be just for him- a place where he wasn't alone and could connect with kids with similar stories. I was lucky to be able to volunteer with PKF when he attended his first Camp Perthes. And that's when I discovered that this wasn't just a connection for Austin, but for me and our whole family! It has been a blessing to meet kids from all over the U.S. and get to know their families and navigate this journey together. I love our Perthes family!"
-- Sara, Mother of a Child with Perthes Disease & Camp Perthes Volunteer
"As a child survivor of Perthes Disease, I had a pretty tough childhood, from being in a wheelchair, casts, leg braces to crutches, but marched on through life to do amazing things despite my early physical challenges... like going on national TV and winning CBS' Survivor: Fiji in 2007. I became the first unanimous winner in the history of the show, and dedicate my perseverance, humility and determination to being a Perthes survivor, first and foremost. I never let Perthes defeat me as an individual and wanted to set up this foundation to give back to families around the world dealing with Legg-Calvé-Perthes disease. It is my hope that we can all connect with one another, help support each other and share our stories."
-- Earl, Founder & President of Perthes Kids Foundation
A big part of PKF's success is due to our Partners & Collaborators, through business donations, media coverage, corporate sponsorships and gifting programs to our foundation. Without their generosity, many activities and events would not be possible in championing our cause to raise more awareness and support families dealing with Perthes disease.
Perthes Kids Foundation is ready to serve the entire community by taking a wide-encompassing approach in its efforts to combat the disease.
The mental, physical and emotional health of children diagnosed with Perthes disease is of utmost importance to us. We take extra care to be patient, well-trained, knowledgeable, empathetic and super clean when dealing with the children at our camps and other events, no matter how challenging or simple the task.
Perthes Kids Foundation has been serving the Perthes community as a nonprofit charity, since 2007. With a Founder that had Perthes disease as a child, who personally understands what kids and adults go through, and a Board of Directors that not only lends medical expertise, but also connections to Fortune 500 companies, government agencies and media coverage, our organization is poised for success at a grassroots and corporate level, to continue marching forward in Perthes advocacy.
We continue to learn about Legg-Calvé-Perthes disease from staying up-to-date with the latest studies, treatments, and discoveries to rolling up our sleeves and getting direct experience. Our goal as an organization is to be a wealth of information to the Perthes community and a safe haven for those affected by this disease. The more we know, the more we can share with parents and general doctors.
We can talk about Perthes and chat online all day, but it is real-world action that will make the most impact on this disease. This includes supporting children as they go through their Perthes journey, right now, and providing information to further Perthes research and treatments, to hopefully find a cure one day. Our organization will continue to fight however we can to make the Perthes experience just a little bit better today, and provide some hope for a better tomorrow.
We are a fun group of professional volunteers, from all walks of life (executives, doctors, firefighters, teachers, coders, therapists, nurses and more), that come together to support the Perthes Kids Foundation cause. If you'd like to join our team for a Perthes event or activity, please do sign up. We welcome anyone that is passionate, willing to work hard, be kind, and show their support to children and families dealing with LCPD.
There are multiple ways you can support Perthes Kids Foundation and its ongoing efforts to improve the lives of children and families living with Legg-Calvé-Perthes disease.
Sign Up For a Program
You can sign up to participate in our ongoing programs, such as Camp Perthes, Volunteers and Global Ambassadors.
Make a Donation
You can truly make a difference in the lives of children, and even help send a kid to camp, by donating to support Perthes Kids Foundation and our great cause.
JOIN OUR SOCIAL MEDIA
Stay current on all of PKF's latest activities and get involved with the Perthes community at large, by connecting with our Twitter, Facebook, Instagram and LinkedIn pages.