Life with hip dysplasia

29th September 2015

Life with hip dysplasia

I talk about my hip condition a lot on the blog, but I realise that with new readers arriving all of the time, some of you might not know what I’m talking about when I refer to “my hip condition”. So, I thought I would dedicate an entire post to the condition that I have lived with my whole life; hip dysplasia.

In addition, I want to raise the awareness of hip dysplasia as it affects 1-3% of newborns, yet so many people have never heard of it before.

I will also explain why there is a picture of my old Converse in this post.

What is hip dysplasia?

Hip dysplasia is a deformation of the hip join. It is also known as congenital dysplasia of the hip (CDH) and development dysplasia of the hip (DDH).

As we are unaware of whether my hip dysplasia is congenital or development you will see me use the terms CDH and DDH interchangeably. However, I’m almost certain I have CDH as a clicky hip was found at birth.

How did I get hip dysplasia?

There are many causes of CDH/DDH, and we are unsure of how I came to have the condition. We can rule out inheritance though, as there is no family history of the condition.

Being female increases your chances of having the condition, as does being born late. I was born over a week late so this may have been one of the causes.

My type of hip dysplasia

There are various types of hip dysplasia with the the degree of deformation varying.

Essentially, I was born with a shallow hip socket on my left side. It has been described as being like a saucer, and prior to surgery my hip wasn’t secure in the join. It could move easily, and as a result it was impossible for cartilage to build up. The hip just grinds against the “socket” like a pestle and mortar.

Why is my condition complicated?

There have been many factors which have made my hip dysplasia complicated, including medical negligence. I won’t be discussing this in detail here right now as I’m currently pursuing a legal case to gain some real answers, but once I know the truth I will share it here. (UPDATE: I won my legal case.)

Life with hip dysplasia

So, what’s the solution?

Early diagnosis! The earlier it is spotted, the better the outcome.

There is no sure way to cure the condition, but it can be improved. Surgery is the main option, and I’ve had a lot of operations. 6 to be exact.

The photo above on the left is following an operation on my hip when I was about two years old. My femur was broken (!!!), repositioned, and held in place with plates and screws (femoral osteotomy). I still have those screws, just in case my desk ever falls apart. Just kidding!

Anyway, you can clearly see my left leg is in a very funny position. I was in that plaster for quite a few months, but judging by this photo I was pretty happy. Clearly I thought I was a rock star or something playing my hairbrush.

In my case, the femoral osteotomy wasn’t the best solution.

The picture on the left is from when I my surgeon built a shelf to keep my hip in place (pelvic osteotomy) when I was 10. It was referred to as a salvage operation. Basically, they needed to do something and do it quick. Being a 10 year old in a full body cast for 6 weeks is about as fun as watching paint dry, but I got through it. It’s not like I had much choice.

How does hip dysplasia affect my life?

Because of the issues I’ve faced with my condition and medical negligence my life has been majorly affected:

  • I have developed osteoarthritis in the join.
  • I have trochanteric bursitis (inflammation of the sac of fluid located between the hip and the muscles). Because of this I have to have steroid injections every couple of months.
  • I find walking painful. The level of pain varies greatly from day to day. It’s very odd.
  • Actually, all exercise is painful.
  • I put more weight on my right leg when I’m in pain with my left leg, and so my shoes wear out unevenly (see the photo of my Converse at the top of the post).
  • It’s affected my career choice.
  • I will need a hip replacement when I’m 40, if not earlier.
  • I don’t have much control over my left leg because the muscles are weak, so I need to drive an automatic car.
  • Giving birth will be difficult. I will probably have to have a cesarean section if I do decide to have children.
  • On that note, if I do have children, there is a very high chance that they will inherit my condition.
  • It’s technically not a disability, and when ever I’ve tried to get help from the government it’s been refused.
  • I walk with a limp, which is very embarrassing.
  • Tight skirts, dresses and trousers show off my hip and makes me look a bit odd.
  • I have huge scars from surgery on my thigh and in my groin. The one of my thigh is really obvious when I wear a bikini (but I wear bikinis anyway!).
  • The pain makes me incredibly depressed.
  • My self-confidence isn’t so great.

Why I’m raising awareness

I’m passionate about raising awareness of this condition because it has affected my life in so many ways, but if spotted early enough, treatment can be straightforward and can have a lot better outcome than mine. Nobody should have to go through what I’ve been through.

Below is an infographic, produced by Steps, telling you how to spot CDH/DDH. Steps is a charity that supports those with lower limp conditions, including hip dysplasia.

My thoughts on blogging...we don't have to fit into categories

If you know someone who is about to give birth or has recently given birth, please share this with them. Health care professionals do not always perform the test for a clicky hip and so parents should look out for these signs themselves.

Thanks for letting me share this with you today.

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  1. I’m glad you could share all this information about your condition. :) Even reading your blog for many years and knowing of your hip condition it’s nice to read another post about it because you’re raising awareness about a rather serious condition. It sucks that you’ve had a lot of pain and had to deal with a lot over the years but I hope that that legal case gets some stuff sorted out for you.

    It’s a shame you won’t get some kind of support from the government. I feel like there could be a way of arguing it as even a minor disability, especially if it hinders your walking.

    • Holly

      Thank you. :) Unfortunately I’ve been for assessments and the government told me that because I can wipe my own arse and eat without assistance, I can’t get anything. I even had to buy my own set of crutches when I couldn’t walk! And I won’t even start on how unhelpful they were when I was in plaster for my chest to my toes. They wouldn’t even supply the pots I needed to pee in!

  2. Amy

    It must be awful dealing with that all the time, especially if you’ve had problems with medical professionals as well. Hope you’re doing okay with it.

    It’s great that you’re sharing your experiences on here. I’d never heard about this condition before reading your blog so well done for raising awareness.
    Xxx

    • Holly

      Thank you. :) I was shocked when I found out that 1-3% of children are affected by it. That’s quite a significant statistic so it’s surprising that so few people have heard about it.

  3. It’s great you are raising awareness, I will share your post. I find puzzling that is not consider a disability when you have difficulties walking. I hope the law will change and you’ll have more support for your condition x

    • Holly

      Thanks so much for sharing it! It means a lot!

      What I didn’t mention in this post is that I’m sharing my story in a book all about DDH/CDH for parents to read. Hopefully this will further help to raise awareness.

  4. Susanne

    Is this the condition where babies have to wear a sort of hip cast that keep the legs in a very spread position? (Yep, I’m a nurse, but definitely not specialised in orthopedic conditions, unless they have to do with tumours) Over here, and I heard it’s specifically at our hospital, they scan all newborns with ultrasound to check for hip conditions (maybe the one you have). An efficient way to give treatment in time. I’m sorry to hear about how they handled it for you and what problems it has caused for you. At least, as far as I know, hip replacement is the “spare part surgery” that is known to have the best results. I have a friend in England, an elderly gentleman, and melodeon player, of 82-ish years, who had a hip replacement some year ago and quite soon after he was around doing his long bike rides and ceili dances. :)

    • Holly

      Yes it is! The spread position forces the hip into place. I would have had that treatment had my condition been diagnosed early. I should have had an ultrasound but someone failed to refer me; another reason why I’m taking legal action. Shockingly, I’ve never had an ultrasound of my hip.

      That’s good to hear about hip replacements. I’m expected to have my first when I’m 40, although it might be sooner. The idea of it being called a “spare part surgery” is hilarious!

  5. Despite the surgeries you’ve been through, you’re a tough girl for making it through and not letting it completely stop you from doing things :)!

    Basically if you’re born late, you’re stuck in the womb longer and would grow larger than the provided space? I can’t imagine the feel of the hip gridning against the socket *___*. Early diagnosis of anything is always best to get the earlest and efficient treatment possible. Despite of not being able to fully exercise, you did a pretty good job with yoga.

    Even though this made you choose a different career choice, you seem excited about your new web developer position :). Thank you for the educational share!

    • Holly

      Thank you!

      Yes, perhaps being born late and being a bigger baby means that there is less space in the womb. I don’t really know how it all works, haha!

      Yoga is great. As I’ve said previously my doctor recommended it to me. But things like running and contact supports are completely out of the question.

  6. You are strong to have gone through all of those surgeries and starting at such a young age. I love how you’re smiling in both of your pictures. =) I definitely have a better understanding now of what you have to go through on a daily basis. It’s a shame to hear that there is no support from the government but I wish you all the best in your legal case!

    I am surprised about that statistic because I also haven’t heard of it prior to reading your blog. Makes me wonder if I know anyone else with this condition. You mentioned that you have not-so-great self-confidence yet you still wear a bikini. I haven’t even mustered up the courage to put one of those on yet. So, you go girl! =)

    • Holly

      Thank you. :) I believe that everything I went through with treatment has made me a stronger person. I used to wear shorts instead of bikini bottoms to hide my scars but at hit my teenage years and I wanted to wear a proper bikini!

      I’m always amazed when I meet people with the same condition or something similar. If people are diagnosed soon enough they might not have any symptoms in later life.

  7. Cat

    Until I read your blog, I didn’t know about hip dysplasia. I think it’s great that you’re raising awareness, and I learned a lot in this entry! I’m surprised that it doesn’t count as a disability when it affects your life so much, especially if walking is painful. Thanks for sharing your experiences and info with us!

    • Holly

      Unfortunately in the UK we have a lot of benefit cheats who get around the systems, such as disability allowance, which makes it difficult for people with genuine problems to get any support.

  8. I have been following your blog for years now and I have read about your condition and the problems you still face from time to time and I couldn’t help admiring you! It takes courage to accept it and then help raise awareness about the same. I read this blog post the same day you published it but I didn’t have the time to comment on it but I liked the way to have sectioned it and written it in a way any layman can understand.

    I wish the government had helped you and recognized that you face problems too with this disability.
    You like to swim too, right? I assume that helps too?

    • Holly

      Thank you! This means a lot.

      I’m glad you like the way I set it out. When it comes to my condition I like to simplify things. I’ve read a lot of my medical records and the words they use are so complicated!

      I love to swim, but I recently realised I hadn’t been swimming in over a year, which is crazy. I’m going to try to make time for it because it’s helpful and enjoyable.