Living with: Hip Dysplasia | Big Society Girl

This is the second condition in my “living with” series. This post is going to be quite long as it’s a complex condition to describe and I will also be talking about the diagnosis and symptoms.

Hip Dysplasia is a relatively new condition to me. I say relatively because I’ve suffered for years, but only recently gained a diagnosis and a full understanding of why my hips have given me trouble for so long. This condition isn’t common amongst adults, my specialist consultant said they may only see around 5 or 6 people a year with it, added up over the country it runs into the hundreds, compared to the population of the country, that isn’t many people.

Hip Dysplasia is genetic. I was born with it and walked the earth for almost 21 years without a diagnosis. This condition isn’t visible so it’s hard to explain, but I’ll do my best. A hip-joint is made up of a socket in the pelvis and a ball at the top of the femur (thigh bone), which slot together to make the joint. Normally the sockets would be facing to the side and slightly forward, allowing the leg to move freely in the forwards direction (imagine sitting, walking, kicking forwards). My sockets face to the side and slightly backward, meaning I can move my leg more freely backwards that I can forwards.

Lost yet?

Basically, this means when I stand, walk, run, kick, sit, lay on my side, sit crossed legged, sit with my knees in front or to the side of me, I am wearing my bones away. Whenever I do one of these actions, because the socket is facing backward, when I put my leg forward, the ball pinches the socket and rubs away the pelvic bone and ball where the ball continually hits the socket. The cartilage that lubricates the joint has been rubbed away as a result. This is really hard to imagine, so here’s a diagram:

hip-dysplasia-dysplastic-anatomySource

As well as the socket facing slightly the wrong way, the socket is shallow, so not as much of the ball is covered by the socket. I can actually pop the ball outwards when I’m stood up because it’s not fully slotted into the socket.

It’s common amongst children, quite a few people will know children who had to be put in a leg brace almost from birth, or it may have happened to themselves. There are varying severities to Hip Dysplasia, sometimes when a child is born it’s obvious that the join of the hips is not correct. With small children a leg brace can improve the condition as bones are still soft and developing, thus almost mouldable. With an adult, bones are hard, strong and only breakable.

For as long as I can remember my hips have clicked (along with other joints) almost every time I moved. It was never a problem when I was younger and I had a full and active childhood. I took part in ballroom dancing for 9 years, I did judo, rock climbing, trampolining, swimming, netball, hockey and badminton. It was in year 10 when I started trampolining and that’s when I noticed pain where I hadn’t noticed it before – in my lower back. I was sent to physio for this but to no avail, as a result, I quit trampolining. Before this, I had already ceased other activities the further into education I got with increasing work loads, so you could say with quitting these activities, I quit injuring myself in the long-term.

Diagnosis

In 2011 when I was 18 I went to my GP in my hometown of Burnley. When I went to the doctors then, I had no idea I had Hip Dysplasia. I complained of aches now and then in my hips and that they clicked, a lot. I got told that it was common amongst people my age and I was sent to physio. I was also told that I would “probably just have to live with it”. Just for the record, physio once again fixed nothing.

That year I moved to Cornwall to start studying Journalism at Falmouth University. During that year I found my knees began to ache, especially at night. I went to the doctors in Falmouth and was sent to physio. It relieved my symptoms for a short while after I was discharged, but the pain returned. Caught up in university work I perservered.

Towards the end of last year my hips were becoming even more clicky and painful, to the point where I almost limped when walking. I also noticed my walking pace had slowed. Because of what I had been told in 2011, I was reluctant to go to the doctor with the same complaint but I did, and it’s one of the best things I ever did. I was asked what was done about it before and instead of being sent to physio, my hips and knees were x-rayed.

This is where things got scary, I went back to the doctors thinking the x-rays would show no more than bones that were fine and weak muscles. I sat down and was told it wasn’t great news. The report came back that I had “degenerative wear and tear” in my hips and knees. The doctor said my knees looked pretty much ok, but my hips resembled those of someone aged 50+. I’m 21.

Pain

Before I explain the treatment for hip dysplasia, I’ll explain why the back and knee pain are relevant to my hips. With the way my sockets are facing backward, it means I stand incorrectly, although it feels normal for me. I stand with a slight arch in my lower back which is more comfortable for my hips but unevenly distributes my weight. To compensate for this I would “lock” my knees back, to a point where it looked like my legs were curved backwards when standing upright. Obviously standing with an arch isn’t a normal position for a spine and my spine is completely normal, so that was where the back pain came from. With my knees, with me compensating the uneven weight distribution, I was constantly snapping my knee-cap back into the fatty pad which protects the knee-joint. I was damaging the fatty pad which was causing the pain.

Now I especially have pain whenever I sit for long periods of time or walk for a long distance. I’ve been told that if I go shopping I must take regular breaks and someone else has to carry my bags (not all bad eh?) as extra weight increases the impact. At night, the most comfortable position I can sleep in is on my front, which makes sense because it forces my hips backward, which is their natural position anyway. Although this position is detrimental to my face as it encourages wrinkles, grr. There is a plus side… I’ve been advised to not to use the gym as its high impact on the joints, no gym for me ever again! I have however been told swimming is probably the only exercise I should ever do. Thankfully, I love swimming, so not all is lost.

Treatment

Being diagnosed with Hip Dysplasia for me is potentially now going to be life changing. I have two options and both involve major surgery, or I can refuse surgery and become wheelchair bound probably around 60. Not ideal. If I had been diagnosed with this when I was younger, I probably wouldn’t have enjoyed all the activities I did, and I certainly wouldn’t have fallen in love with Ballroom dancing for long enough to stick at it for 9 years. I probably wouldn’t even have taken part in P.E at school. My childhood would have been completely different, but my adulthood would have probably had a healthier outlook.

The first major surgery available to me is corrective and should ideally be performed before I’m 35. My pelvic bone would be shaved to correct the position of the socket to allow my legs to move in the correct direction, stand correctly and stop injuring my knees. The recovery time is 6-12 months. This would have a major, major impact on my life right now.

The second major surgery available to me is two hip replacements when I’m around 50 and incapable of walking. At the moment hip replacements last around 15-20 years, meaning the surgery would have to be repeated when I’m around 70. Hip replacement is inevitable for me even if I have corrective surgery as the damage has already been done. If I had corrective surgery, hip replacements would only have to be performed once. If I don’t have corrective surgery and choose this option anyway, it is possible that hip replacement surgery would have advanced by the time I need it, but it’s a chance I would be taking.

I’m currently under a specialist physio who is trying to improve the rotation of my pelvic bone to reduce the impact of the ball on the pelvis. As well as this I’m going to talk to a surgeon in May.

Sorry that this post has been so long but it’s something I wanted to share. It’s not common amongst adults so maybe my experience can help others. If you’ve got this far, thank you so much for reading.

So there you have it, Hip Dysplasia in all it’s glory. Who’d have thought at the age of 21 I’d have to make a decision that would affect the rest of my life?

If you want to talk about this more, or have an experience you’d like to share with me yourself, please feel free to:

Email me: agirlfromthebigsociety@live.co.uk

Tweet me: @bigsocietygirl

Or simply comment below :)

Natalie

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If you would like to read the first post from this series, click here.
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7 responses to “Living with: Hip Dysplasia | Big Society Girl

  1. Such a sad, but really informative post to read. Like I mentioned last night on twitter, I didn’t realise humans could be faced with hip dysplasia and thought it was just dogs. I can’t believe that you’re faced with such a huge decision of having corrective surgery before you’re 35 – such a responsibility upon your shoulders to choose when the right time will be, especially having to have 6 – 12 months off to recover : ( Good luck. I hope your Physio is able to reduce the amount of pain and discomfort or prolong the length of time before you need to be operated on.

    Laura x | Life and Lipstick

    • Sorry it’s taken me so long to reply! It’s partly why I wanted to write it because it’s not somethign that’s so well known, apparently it’s only recently being fully researched in adults too. It is a huge responsibility, i’m just exploring all options first before I decide. I hope so too! Thank you for reading :) xx

  2. I was fascinated to read this as I’ve never heard of this and didn’t know what it was! It’s always brave to write posts like this and I hope it’s good for you to do this, as well as possibly help someone who may be struggling with similar symptoms.

    After last nights chat it’s really nice to see more about the person behind the blog, and what people have to deal with.

    Thanks for letting me know you posted this, I’m following you on wordpress now xx

    Nina x

    • It’s not a condition which is well known you see, so partly why I watne to write it was to create more awareness about it and make people who are around me everyday understand a little bit more about it. Thank you :) it’s really nice to get such positive comments when I share a little piece of my life with the internet! :) xx

  3. Wow, I popped over to catch up on your latest beauty posts but fab as they are, this was so much more compelling. I never knew this condition existed in adults and was interested to hear such a comprehensive account. I am so sorry you have to deal with this but admire the positive way you are x

    Jules
    http://www.lippylikes.com

    • Hi Jules, thanks for your comment :) I didn’t know it existed in adults either until I was diagnosed with it. I’m glad that more people have become aware of the condition because I blogged about it, the response has been amazing!
      If you can’t be positive, you’re gonna have a bad time ;)

      Thanks for reading! Xx

  4. I have this condition too and was diagnosed at 28. DO NOT listen to all doctors. I have seen many many orthopedic surgeons over the years. Swimming is NOT the only activity for you. Cycling, yoga, pilates, elliptical (with no resistance) are all fine for arthritic hips. Rule of thumb: if it hurts, don’t do it. Weight training will do you loads of good in strengthening your back and core to keep you from having surgery sooner. Please please educate yourself and don’t limit yourself to what one doctor says.

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