Jen Lesea-Ames, Founder, The PAO Project and Editor, “Onward! Navigating Hip Dysplasia, PAO Surgery, and Beyond”
A Bay Area, CA native, I moved to Boulder, CO, in 1996 to pursue a graduate degree in Kinesiology. I was a certified personal trainer, as well as a running and triathlon coach, for more than 17 years. I had competed in many triathlons and running races. Little did I know that I had hip dysplasia, a congenital disease that I was not diagnosed with until March 2013 at age 39.
After my diagnosis, I saw a rapid decline in my health, and I suffered with severe chronic pain for over a year. My only hope was to consider periacetabular osteotomy (PAO) surgery. After meeting with six orthopedic surgeons across two states, I had my first PAO surgery on my left hip on April 8, 2014, and then on my right hip on December 16, 2014, with Dr. Michael J. Bellino at Stanford Hospital and Clinics (Palo Alto, CA).
Here is my most recent X-ray at my two-year post-op appointment, fully healed:
I am now enjoying an active, pain-free life. Below is a picture of me finishing the 2016 Ragnar Trail Relay in Snowmass, CO. I ran 14.5 miles on trail with 3000 feet elevation gain!
When I was first diagnosed with hip dysplasia, I initially thought it was a disease found only in dogs. When my orthopedist told me otherwise, I did an online search of “hip dysplasia” and the top three of five search results were for canine hip dysplasia. It was at that moment I realized the gap in awareness of human (and in particular, adult) hip dysplasia. Tapping into my inner entrepreneur, I knew that by sharing my story and others’ stories, I could help increase awareness of adult hip dysplasia. Hence, The PAO Project (www.thepaoproject.com) was born. Eventually, the anthology “Onward! Navigating Hip Dysplasia, PAO Surgery, and Recovery” was published in December, 2015. It’s available on Amazon here.
Here is picture of me with the book on the summit of Mt. Audubon, elevation 13,229 feet. (July 2016)
My next steps are to create a workbook to help those who are facing PAO surgery and to launch a national PR campaign for “Onward!” and The PAO Project to further increase awareness of hip dysplasia.
If you are interested in getting involved with increasing awareness of hip dysplasia or getting involved directly with IHDI, my advice is to be clear on how you can contribute and don’t be afraid to make phone calls or send emails to ask how you can help.
If you find yourself (or your child) newly diagnosed with hip dysplasia, educate yourself as much as possible through the IDHI website, and join online support groups (there are free Facebook support groups for hip dysplasia and periacetabular osteotomy (PAO)). Get opinions from at least two to three orthopedic surgeons specializing in hip dysplasia/hip preservation. Always be an advocate for your (or loved one’s) health and listen to your instincts!