Hi my name is Naomi and I am 16. I was diagnosed with bilateral Hip Dysplasia at birth but I was also born premature so that made the disability harder to correct. None of the treatments worked and so now I live with this everyday. I have had three surgeries, all before I was three. one left me in double leg casts up to my hips which caused me to pull myself around the house. I have very limited range of motion, this means I cannot ride a bike or cross my legs. My parents were lost with what to do, we’ve tried almost everything. I have learned that heat helps and pain relief pills have a limited ability to help.

Last year I was given the opportunity to try Steroid shots, four in each hip, which worked for a month instead of six. I want to share my story because I wish I could talk to someone who understood the pain I have and I hope people benefit from reading what I have been through. One week ago I took trip to another hospital to see a doctor about double hip replacement surgery, I wanted my pain to go away. The doctor told me that a surgery would make everything worse. He told me that I had to loose weight because there is too much weight being put on the muscles that my hip bones are attached to. I have been to about five doctors and every single one has told me that surgery was my only hope.

I want to share this because I want my pain gone and hearing that surgery was not in the picture for me at the moment, broke my heart. I don’t want to let anyone else get their hopes up like I did because we all deserve to be told the truth no matter what. I have wished that I had a friend who knew how to act around me when I was in pain. I wish I could do more. I have this list of what I want to do after surgery, now it seems trivial to keep. I have kept this to myself for a very long time. Now I feel like I should tell this now because kids are cruel.

As time progresses, nothing was getting better and kids were noticing more. one of my friends told me that he heard a girl, who is known for her rude comments, tell another that I don’t know how to walk. As most of you know because of our disability, most walk with a “waddle”. a few months ago, a transgender boy told me that I don’t know what its like because I am a white girl, I don’t know that it means to be different. I tried to explain but was told that it was a race issue and other factors didn’t matter. when things like this happen I feel so lost and alone. I wish people were nicer. Even teachers who don’t know me have tried to take away my key to the schools elevator, my school has 11 floors, including subbasements and additions.

I want this story to help people who may feel about at lost as I do. I want to see comments and all I want is to be normal. I know that this is an impossible task, but I can hope. All we can ever do is hope and I don’t know about anyone else, I don’t want to be considered an inspiration. If I’ve said it once ill say it again, I want to be normal.

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  1. Kim says:

    Hang in there! There is always hope. You can lose the weight and it will help you with mobility and may give you the opportunity for surgery. No matter your age, there will always be people who do not understand this kind of disability or limitation. I am 53 and have also suffered my whole life. You got this….and I believe in you!

  2. Sarah says:

    I’m 27 years old
    I have hip dysplasia diagnosed at the age of 8 years I did an operation but without result, I advise you to lose the weight I weigh 44 kg and I could bear.
    I have pain, but it’s just when I walk a lot.
    I understand you perfectly I am disabled in all my life I dreamed of the operation I dreamed of being a normal person.
    but even with the age I have for doctors I’m still young

  3. Ambar says:

    Hi Naomi my 13 year old son has Avascular Necrosis which is similar to what you have. Would you talk to him so he doesn’t feel alone?

  4. says:

    I do not know how well I could help but if you believe I can I would love to try in a safe online environment.

  5. Lucy Jackson says:

    Hi Naomi,

    Your story is heartbreaking it truly is, you should be having surgery, not being told to lose weight that is dreadful.
    I have bilateral hip dysplasia I have been very lucky to reach the age of 39 before becoming symptomatic, I weighed 9 stone before my problems started, I am now 2 stone heavier, and have one hip replaced, I need the other done the pain is severe, it makes me cross that you and many others are being poorly treated, get a second opinion, and keep going back, there are doctors out there that do know what they are talking about when it comes to hip dysplasia, it took 2 years for me to find one, but keep going, you have your whole life ahead and should not be spending it in crippling pain unable to be mobile. Good luck, best wishes Lucy.

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