My Personal Story - Growing up with Hip Dysplasia undetected
My Name is Wenda and I am 35 years old living with congenital hip dysplasia on my right hip. I was born with hip dysplasia however due to the lack of proper screening and investigation, I was not diagnosed with hip dysplasia until I was 24 years old.
Ever since I could remember, I have always had pain when walking and always walked with a slight limp. It also hurts when I sin in one position for over a few minutes and can’t even sit through a TV segment without needing to change my leg position. As a child, my parents took me to see multiple doctors including several family physicians, paediatricians, podiatrists, and even chiropractors but none were able to diagnose me with anything and we were consistently told that it was just growing pains. Not one of the doctors ever suggested to investigate further with x-rays or to refer me to any specialists. One physician even told my parents I just need to learn to walk properly so my parents enrolled me in personal development classes to learn how to walk better but of course, it did not help.
Since no doctors could find anything wrong with me, I was led to believe that it was all in my mind and it was normal to have constant pain and to just “deal with it.” Through my entire childhood and adolescence, I thought I just had extremely low pain tolerance and needed to stop complaining. When other people asked me why I was limping, I would just say I was tired and just carried on living with the pain.
Due to the pain, I was not able to properly enjoy many of the recreational activities my parents enrolled me in such as dance class, gymnastics, and ringette and I even had difficulties in physical education class when it came to running and high impact activities which would increase my pain. However as I could not justify why I had pains, the instructors acted like I was just making excuses and continued to push me to perform all the activities even though I could not do them properly.
As I got older, the pain continued to intensify to the point where sometimes it was painful for me to even walk half a block without excruciating pain. The pain would shoot down my entire leg and cover my buttocks and hip flexors. I also could not sit or even lie in any position for very long without extreme pain. Finally at the age of 24, I decided to try to investigate my pain again so I went to see a physiotherapist watched the way I walked and tested the rotation of my legs and hips. It was this physiotherapist who told me that he suspected I had hip dysplasia and advised me to see my family physician and get a referral to see a sports medicine doctor to further investigate.
When I finally saw the sports medicine doctor, I was asked to do a simple weight bearing x-ray which then revealed that I indeed was born with developmental hip dysplasia where my hip socket was too shallow for the head of the femur. I was then immediately referred to a special orthopaedics surgeon at Vancouver General Hospital who told me that unfortunately by that time, it was too late for me to be treated with any non-invasive procedures or be cured and that the only option is to have a hip replacement. I was also told that I will most likely have early osteoporosis as a result of the hip dysplasia. However, I was also too young to have a hip replacement since hip replacements don’t last a lifetime and I will most likely need revisions which gets more complicated each time. Therefore I was told that the best option is for me to wait for as long as I can before having my hip replaced so to minimize the number of revisions I will need to go through.
I am currently still living with the pain and difficulty walking and am trying to keep my weight low to decrease the pressure on my hips. I am hoping to keep my natural hips for as long as I can manage but it is definitely not easy. I am very disappointed with the medical system for not having properly screened me for my condition when I was born or even as a child when I complained about my pains. If I had been properly diagnosed as a baby or even a child, there would have been procedures that could have potentially fixed my condition and I would not have to live with a lifetime of pain and needing a hip replacement.
I vowed to myself that when I have children, they must all be screened and monitored so that they will never go through anything like this. When I was pregnant, I was constantly reading information about new babies and how to care for your child and any conditions to look out for. I was shocked that there was NO mention of hip conditions or hip dysplasia or any notice to get children’s hips checked. There was also no information on best swaddling practices for babies to prevent hip conditions. I could not believe that a condition that has such a powerful impact on a child’s quality of life was not presented anywhere to new parents or even to the general public! Therefore when I gave birth to my baby girl, I was adamant that she gets all the proper screening and tests done to ensure that she will not have to grow up with the same pain and will get the treatment she needs as early as possible.
I am sharing my story so that everyone can understand that hip dysplasia is real, and if undetected, it has a significant impact on a child and even an adult’s life. I want everyone out there no matter what age, if you have experienced the type of pain in your hips, groin, thigh, or femur or even having an unexplainable limp – please ask your doctor to examine you for possible hip dysplasia. If you or your loved one has hip dysplasia, know that you are not alone, and I hope that this online community will be a safe place where we can support each other with words of encouragement, advice, and resources.