Robyn’s Story

This is my story, l’m 27 years old, I live in St Helens, Lancashire, England. I was born with NO hip sockets (they were flat, with no shape to them whatsoever) and was diagonsed with bilateral developmental hip dysplasia.

When I was born the only treatment available was a craig splint, as a cast was only effective if there was shallow hip sockets. When I reached 6 months old, my parents were told that my hips had formed and I was going to be discharged. I was discharged only for us to find out, when I was 23 and having physio for a cartalige problem in my left knee, that my hip sockets hadn’t fully developed.

In my pre-teen and teen yaers I suffered from frequint dislocations, pain, and walked/ran like a toddler… I still do, much to my friend’s and family’s amusement.  In the last 2 years I have been refered to a specialist in DDH and had a dynamic arthrogram and multiple steroid injections.  I’m currently waiting for another one.I have made a deal with my consultant in regards to my weight, that if I lose enough weight to reach 14 stone then he will start the process for APO. I’m now at 15 stone from a starting weight of 17 stone.

I haven’t ever heard of anyone else being born without any hip sockets.

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6 Notes

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  1. Allie says:

    Congrats on your weight loss! It is so difficult to lose weight when you have difficulty moving (I am working on this as well.) Hope you are doing well.

  2. Diane says:

    Congrats on being on the weight loss!! I was born with no hip sockets and malformed leg bones and was not diagnosed until age two. At age 6 the ortho surgeon took bone from the lower part of my leg and grafted it make sockets, I still have the pins in my hips used to hold the grafts in place. My condition is hereditary but thank God did not pass down to my son. I had the left hip replaced at age 52 and 5 years later need the right one done.

  3. Sylvie says:

    Hi Robyn, one of my daughters was born in 1985 with same pbm and had to be in a cast for 6 months as a baby.
    She is now a fit and healthy young mother of a lovely little girl….. With normal hips!
    I was apparently born with a similar issue, which was never diagnosed before my 40s and have had now both hips successfully replaced.
    My daughter did also lose much weight and am sure her new diet and exercise routines are a huge part of how great she feels and looks today! Keep it up, you will soon reach your goal!!

  4. fiona says:

    Hi Robyn. I am from Newmarket, Suffolk. I was born in 1979 with no hip joints and was not diagnosed for over a year when my parents kept insisting something was wrong. I was in hospital almost constantly for 3 years had 6 operations – 2 left hip, 4 right – and was in a cast for many months. Have been lucky in that my surgeon did a good job and I could do most things. However, after fracturing my pubic rami 4 years ago – horse fell on top of me – I have pronounced limp and pain in my groin which is limiting.

  5. Robyn Rona D says:

    Thanks everyone for your encouragement :-)
    I’m having more problems with both the pain & my mobility was i now haave to use a wheelchair most days.
    I’m hoping that my appeal for disability living allowance will be successful on June 27th. I’m on my way to be assessed for my local pain clinic as my pain meds have stopped working. :-(

  6. Chantel says:

    Hello! Keep rocking the weight loss girl. I was born without a hip socket and had to be in splints . Due to the severity I will need a replacement hip this year , at the age of 22 . Good luck girl , your not alone

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