Has your child recently been diagnosed with Legg Calve Perthes Disease? Are you feeling overwhelmed and looking for answers? We have your back!
- As a parent of a child who received an unexpected rare disease diagnosis, it was entirely overwhelming. Then, a million questions followed….
- Why my kid? How long will this take? Will she be OK? What about walking? What are our options for surgery? Is surgery necessary? How can I manage the pain without over using OTC medication? What foods will help minimize the pain and grow strong bones? Who else has this? Where can I find a support group? …
After the initial shock set it, I focused on learning as much as possible, much you are likely doing now! The intent behind the resources below are designed to help cover the bulk of questions and thoughts, answered by top surgeons, dieticians, nutritionist, therapists (physical and emotional!), other parents and more! to help aid in your journey.
We are always adding to our library of resources, please continue to come back and SHARE this page with other parents looking for additional resources and information.
Top Perthes Disease Resources
- Perthes 101 – Who, What and Why my Child?
- Find a Perthes Specialist.
- Questions for Appointment – A printable list.
- Buy the Parents Guide to Perthes. A great go-to resource.
- Adapting to Life with Perthes – Equipment Considerations.
- Pain Management and Range of Motion (ROM) techniques -maintaining good ROM is critical during Perthes.
- The psychological impact of Perthes is real. Read more to prep you, your family, and your child.
- Diet and Nutrition, maintaining a healthy weight will aid in pain reduction.
- Planning for School Accommodations and the 504 Plan.
- Find Support. Also, help educate those around you by sharing resources from this page.
- Surviving the Petri Cast by Parent blogger.
- Join the Perthes Contact Registry – help future research.
- Perthes Blog – New blog posts regularly added.
- Perthes Glossary – There are lots of new terms to learn, here’s a quick reference guide.
- Listen to Dr. Harry Kim of Texas Scottish Rite Hospital and Dr. Wudbhav (Woody) Sankar of Children’s Hospital of Philadelphia answer over 30 questions about Perthes Disease.
- Seeking resources in Spanish? Listen to Dr. Leah Cobb of San Jorge Children’s Hospital in San Juan, Puerto Rico.
- Current Perthes Studies from the International Perthes Study Group.
- Learn more about rare disease resources from the National Organization of Rare Disorders.
- Perthes Perspective: An Approach to Treatment by Dr. Shawn Standard.
Alone we are rare. Together, we are #PerthesStrong.
Read other Perthes related stories here:
- Hip Replacement Dude
- Young, Hip, and Horsey
- Adaptive Athlete Down Under
- Perthes Life
- Pedal through Perthes
- Perthes Journey Blogspot
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