Hello, I’m Amber and I thought I’d share my story so far dealing with hip dysplasia. Hip dysplasia is a rare joint deformity and I’m a small percentage to deal with this ongoing struggle.
As you’re born you’re examined for joint deformities, doctors look out for clicking, asymmetric limbs, flexibility, etc. When I was born there was no sign to say I had a deformity. So, at the age of about 30 months old, when I had started walking, family members took interest to how I walked. I limped whenever I walked, my left trouser leg used to fall down more than the right and I held on to items for balance. It was then discovered that I had hip dysplasia.
There’s no reason to me why I have hip dysplasia, there’s sometimes reasons like positioning in the womb, drug intake, the birth itself, etc. I had an operation at the age of 3 years old which was called a pelvic osteotomy. Unfortunately, this procedure didn’t help my development and so not long after I had hip reduction surgery at about 4 years old. I was in a cast up to my waist with a bar separating my legsfor about 3 months to help flexibility. Then I was in a wheelchair for about 8 months, I believe the second surgery and procedures helped me develop later down the line. However, I wasn’t cured.
Looking back into my childhood I didn’t really notice any pain I might have had so that’s a great positive. But I knew I was restricted physically, I was overweight from being inactive which influenced bullying. When puberty struck that’s when my hip, leg and groin pain worsened. At the age of 13 I had an x-ray as I ‘tramuatised’ the joint, I had mixed views from doctors about what the x-ray suggested. One doctor said they saw floating bone, my previous surgeon saw nothing wrong. I was referred to physiotherapy but I couldn’t deal with the pain of walking back and forth to school and adding in exercise sessions.
For 4 years I dealt with the pain I had and took movements easy. After a while I saw my pain as a normal thing, so much so that I didn’t think it was anything wrong. But, at 17 years old the pain was noticeably getting worse. Over the 4 years previous I had dealt with hip clicking and a case of random stings but nothing like the pain I later recognised. I went back to the doctor, this time they gave me an MRI scan and arthrogram and realised much damage was made. For 5 years I had so much damage to the hip, the more time went by the worse it got. In the scan a cyst was visible on a bundle of nerves near my pelvis. There was worn down tissues of the hip joint and a torn labrum.
5 months ago I had a hip arthroscopy, my previous surgeon operated on me again. He removed the cyst, took bone marrow from me and injected into the affected area to hopefully repair my labrum and cartilage. I never had a hip replacement because of my age, my surgeon has hope that my hip will repair itself for a few more years worth of activity. I will need a hip replacement, I don’t know when as of yet. I’m currently working on my health, I’m attending physiotherapy and independently doing exercises to help my hips 3 times a day. I’m relieved that the operation went so well, as I’m older I was so scared because I forgot the feeling of being put under and the pain I may endure after the surgery. But it was okay, it went so well and I’m super proud of myself.
I’ve got to admit, not everyday is the same, some days I’ll get a small ache and other days I’ll get a lot of pain. I don’t know as of yet whether it’s because I’ve just had an operation or if this is just me. Some days I can feel really depressed about what I have to deal with on a daily basis and ask myself “why me?” But, no person is the same and I have it so much easier than some. But most days I stay positive and embrace the little old lady I am, I’m alive, I’m loved, I’m cared for and I’m not alone.
I’m writing this because I’ve never shared my story before, in a way it’s almost like you’re getting people to feel sorry for you. But I’m writing it because I may not personally know anyone with the problem I have or anything similar but I know there are people out there and I hope they can read this and feel proud of how far they’ve come and embrace who they are. There isn’t enough being done with people like us in ways of fundraising, promoting, informing and serving this deformity like any other disability. Hip dysplasia is seen as a deformity and not a disability, hip dysplasia can be restricting, life changing and can be physically and mentally damaging. I want more awareness and change to happen for people like us.
I’d love it if you could share this on your page, I think more people, young people in particular, need to know how special they are and how they aren’t alone.
Amber Jade Thomas