Perthes-the forgotten disease

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My son was 8 years old when he started walking with a limp. He was very athletic and his basketball team had just won the championship a month earlier, so I thought he may have pulled a muscle. A week later he was still limping so we took him to his pediatrician who referred him to Children's Hospital. Xrays confirmed he had Perthes. We were devastated. That night as my husband and I sat and watched our son sleep we cried and prayed that he would not have Perthes in both hips. Unfortunately, test results confirmed he had bilateral Perthes in both hips. Our son is now 40 years old. He underwent a hip replacement a year ago and will need to have another. He has suffered almost his entire life. There are days he can barely walk yet won't miss work in order to support his family. Since his hip replacement last year he still lives with pain that has become a way of life for him. This crippling disease will affect millions of children in our lifetime, yet there is absolutely NOTHING, in regards to research or studies being done on prevention or better treatment. Why is it that medical science seems to keep this devastating crippling disease from the public? This disease should not be treated as if it was medical science's "dirty little secret". Children with this debilitating disease suffer both physically and mentally. It strips a child of their God given talents, self esteem, goals and hopes and dreams for a bright future cease to exist.

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  • Posted

    Hi my son is 9 and was diognosed at 7 same thing started walking with a limp but hadnt done anything to cause this so after getting it checked he was diagnosed march 16.. had osteotmy august 16 and then removal of plate july 17.. he is now 2cm shorter on his left leg and has to have a wedge on his shoe.. my son is or was should i say very active and this has effected us all in a huge way i have 2 other children aged 13 and 1.. he completed over a year of physio and has now been discharged as they feel hes reached all his goals like i told surgeon the other day i personally dont think its helped at all but he seems happy with it all. My son still walks with an obvious limp and has started to tire very quickly and is stiffening up more now than he used to. Surgeon says he has to deal with pain and he will see him in a year. If by 11 his left leg hasnt caught up with his right then there will be more surgery to even these out times are so hard for him its a shame. He should be out playing like other kids ... i think its going to be a long road ahead.. people look at me stupid when i say its changed our lives but it really has we cant go out and do things we used to.
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    • Posted

      Hi Michelle. I can certainly relate. Victims of this debilitating disease are not only children but their parents as well. It's heartbreaking to see your child in pain and struggling to walk. My son was wore a brace for 4 years which didn't seem to help and in and out of traction. He was laughed at and mocked. Yes, it forever changes lives, and it will be a long road ahead, but your son, you and your family will be victorious by the grace of God. The love and support you express will give your son the confidence he needs to make this life changing transition from childhood to adulthood with a successful future. My son went on to college after high school. Where there is faith and love there is hope. Your son is the same person he was. Never let him forget that. Encourage him everyday for that builds character and he will become the young man you will be proud of.

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    • Posted

      Hi Michelle, I feel for you, I was 11 and a late stage perthese and my leg was shorter too, I walked with a limp from that age until I was 47 when I had a hip replacement this year and it's wonderful, no more pain and leg was lengthened to match. I was very active from 15 upwards and even joined the army reserves, did a whole heap of running and it was only after a ridiculous amount of running at age of 38 that I got serious arthritis and so struggled on. Pain most days but really only from 38 onwards to be honest, cysts in hip and it looked bad but it's great now. Made me psychologically stronger and also pain threshold was so much higher. 

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  • Posted

    I also have posts on this site for our journey with perthes disease.

    ?To make the matter either more confusing for you or to answer some of your questions please visit this site.

    https://openi.nlm.nih.gov/detailedresult.php?img=PMC3308661_IJOrtho-46-191-g001&req=4

    ?It looks as if this chart shows that Perthes disease is related to TB hip. Could TB be the dirty little secret.  My mother-in-law had TB and my husband tested positive for it but did NOT take his antibiotics.  If there is TB in your family, it might be easier(for the system)  just to treat the Perthes than to scare the USA with another TB scare. 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4292318/

    http://www.scielo.org.za/scielo.php?script=sci_arttext&pid=S1681-150X2013000100008

    ?wouldn't it have been wonderful if all that was needed was antibiotics at an early age?

    ?God bless you on your journey.

     

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