One Hip World: GUEST BLOGGER: DENISE SUTHERLAND

GUEST BLOGGER: Denise Sutherland

HIP FOR A LIFETIME

I've had problems with my hips from birth. My dysplasia was picked up when I was 20 months old, and not walking properly. As I was my parent's first child, they didn't realise that what I was doing (or not doing) wasn't normal. It was my grandparents who raised the alarm.

Photo of me and my mum, in Canberra Australia 1969

The brown thing on my knee is a leather pad my dad made to protect the cast,

when I went pulling myself about the place.

I had a lot of surgery, both in my native Australia and the USA, most of which failed. A tendonectomy, a failed closed reduction, two failed open reductions, and months in frog-leg plaster and braces. When we moved to the USA in 1969 (for a few years), I was seen my Dr Wayne Southwick at Yale-New Haven Hospital. He did an experimental technique on me, which involved serious traction (metal bar through my knee) rotating my left leg inwards with an open reduction, setting it, then a few months later breaking the femur and rotating the lower section of my leg outwards. Gruesome as it was, this did work! I was five.

Dr Southwick said he thought the repair would last for about 40 years. I had about 20 years of reasonably normal hip functioning (although I've never been good at sports). I had a lot of hip pain during my two pregnancies, and had to have Caesarians, as my pelvis is very distorted, and no babies can get out that way.

As was expected, in my 30s I started to develop osteoarthritis in the joint, and I spent a lot of my early 40s on a walking stick and then crutches. My poor old left hip was finally replaced when I was 45 (yes, exactly 40 years!). I had to have an especially small prosthesis, as my leg bones are abnormally small (common with dysplasia patients), and I have permanent hip restrictions. My new surgeon, Dr Damian Smith in Canberra, did a fantastic job with my very difficult anatomy. I chose him because he is a childhood dysplasia expert, and he really understood my weird mangled anatomy. Unfortunately my right hip has also developed dysplasia over more recent years, so now it is dysplastic as well, and showing early signs of osteoarthritis.

My L THR, x-ray taken 2012

I get frustrated with people who think that once I had my THR, that was all my hip problems 'fixed' for good. No — this is just the start of my adult hip surgeries. THR doesn't last forever, and it's likely that it will need to be revised (replaced) at some point, which is a less successful surgery, in general. My right hip isn't normal either, so that's another THR too.

The most positive thing I've done as a result of my lifetime of hip problems is to write a book, http://www.lulu.com/shop/denise-sutherland-and-dr-sophie-west/a-guide-for-adults-with-hip-dysplasia/paperback/product-18753968.html - Guide for Adults with Hip Dysplasia. There were no books for adults with this condition - whether those who had been diagnosed and treated in childhood and now had more problems as adults, or for adults who had developed the condition in later life.

I have been a member of the excellent Yahoo group, http://health.groups.yahoo.com/group/hipwomen/, for many years (I'm now one of the moderators). It is a supportive group (with over 1,400 members) of women with hip dysplasia from all over the world. I thought it would be a great idea to pool our combined experiences and knowledge, and write a book for us. Soon after I started planning the book, I teamed up with Dr Sophie West from the UK. Not only is she a young orthopaedic surgeon, but she has bilateral dysplasia and has had two PAOs, so she really understands this condition from both sides of the operating table!

The book took us two years to write. We've covered every single thing we could think of about hip dysplasia (which turned out to be quite a lot!). It is 456 pages long, illustrated, and written in easy to understand clear English, with a minimal amount of jargon. It includes over 400 quotations from other adult hip dysplasia patients, about their experiences and thoughts. It is so wonderful when we hear from readers how much the book is helping them, it's the best reward for us.

I was also thrilled when I discovered that the International Hip Dysplasia Institute had been started. There has long been a need for this sort of a professional group, that is closely looking at how to encourage early diagnosis and prevention of hip dysplasia, provide authoritative information for parents and adult patients, and undertake research into this debilitating condition. Dr Charles Price from the IHDI has been very helpful to Sophie and me; he reviewed sections of the book for us, and has been very kind in recommending it widely. It is great to have them by our side!