Patient Stories

Naomi


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.