Life with hip dysplasia
29th September 2015
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.)
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.
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.