Patient Stories

Mary

At 20 years old, I suddenly began experiencing hip pain and had no idea why. Then I found out I was in a Pavlik harness as an infant, but my hip dysplasia was not corrected. My journey began with doctors telling me that I would eventually need hip replacements, and to avoid any high impact activity, but nothing could be done in the meantime. Ten years later I found a hip specialist who told me about the periacetabular osteotomy procedure, and where to find a surgeon who could do it. I had to travel 6 hours to this surgeon, and I felt like I was alone in this journey – seeking a specialized surgery that was performed by so few surgeons throughout the country.

After my PAO and recovery, I started a group on Facebook specifically for PAO patients. I didn’t really expect much from it, and to my surprise it has grown to an incredible, supportive community of over 5,000 people so far. I wish that such a community had been around when I began my journey, but I am thankful that these patients, parents and advocates are able to support and learn from each other now. We are all in this together!

As I learned more about hip dysplasia, I discovered the importance of early screening, especially if there is a family history. I pushed to have my son screened, and even had to go directly to a pediatric hip specialist after the pediatrician said he did not need any further screening. He was found to have bilateral hip dysplasia at 5 months old, and he was in a hip abduction brace for several months. During that time I also researched and learned a lot about baby carriers, and found that a wrap (although somewhat difficult to learn to use initially) worked best for me while he was in an abduction brace. We returned to this specialist every year for followup x-rays until he was cleared. Although I was screened and was in a brace as an infant as well, the followups and continued monitoring were missing from my equation, and I do wonder how my journey could have been different if that had happened for me.

Through continuing education and advocacy, my hope is that fewer adults will have undiagnosed hip dysplasia and need major corrective surgeries. I am grateful for everyone who shares their stories and works to spread knowledge about this issue!