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Perthes Disease (Legg-Calve-Perthes Disease/Syndrome)

Posted by lammersk @lammersk, Sep 2, 2011

Hi, my 7 year old daughter was recently diagnosed with Perthes Disease. Although, she is under great medical care, I have not met anyone who has been through this before. I have many questions. My daughter is a very happy little girl who is also very active. I am concerned about the level of activity that she is supposed to have. Her doctor here in Florida only told me that she was not allowed to do P.E., run, jump, and in general, that she was supposed to not stress that leg. However, he did not recommend any therapy. Anyone?

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gymnasticsmom42 | @gymnasticsmom42 | Nov 1, 2012

My daughter was diagnosed at age 10. She was put into a wheel chair and on crutches for two years. She did aqua therapy during that time. The doctors said it helped her. It has been three years since her first hip problem that led to this diagnosis. She has been through two surgerys and lots of physical and aqua therapy. She still has to have a hip replacement we are hoping not for a couple more years. The reason hers was so bad is she wasn't diagnosed until almost 11. Your daughter has a better chance only being 7. Most cases of this heal within 3 years. Good Luck

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cassiemarie74 | @cassiemarie74 | Apr 29, 2019

Hello! I had legg perthes disease when I was between 5 and 7 years old. I lived in Boston and received some of the best care. I was in a wheel chair and a full leg cast with a bar in the middle to hold my legs in that position so my ball in my socket could get blood supply and grow and heal. I had no surgeries, at least that I can remember. I am 28 now and I do have hip pains if I over work it. This disease is supposed to be rare period and more rare for girls, but that is all I have ever heard of having it was girls.

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lioness | @lioness | Apr 29, 2019
In reply to @cassiemarie74 "Hello! I had legg perthes disease when I was between 5 and 7 years old. I..." + (show)
@cassiemarie74

Hello! I had legg perthes disease when I was between 5 and 7 years old. I lived in Boston and received some of the best care. I was in a wheel chair and a full leg cast with a bar in the middle to hold my legs in that position so my ball in my socket could get blood supply and grow and heal. I had no surgeries, at least that I can remember. I am 28 now and I do have hip pains if I over work it. This disease is supposed to be rare period and more rare for girls, but that is all I have ever heard of having it was girls.

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@cassiemarie74 Welcome to connect we share to others where we can My husband had Perthies He had surgery when he was young but had a limp His nephew had it also I haven't heard of anyone else till you mentioned it Did it leave you with a limp?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 30, 2019

Hello @cassiemarie74

I would like to join @lioness in welcoming you to Connect. For those of us who are not familiar with Perthes Disease, I found a link on Mayo's website which explains it, https://www.mayoclinic.org/diseases-conditions/legg-calve-perthes-disease/symptoms-causes/syc-20374343

How are you doing now? Is the hip pain your main symptom? What type of treatments (such as PT) is available to help you?

I look forward to getting to know you!

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