Atesa, Miles4Hips Champion Story & Senior Project

Atesa is a recent high school graduate who earned her title as a “Miles4Hips Champion” by partnering with Miles4Hips for her high school senior year internship and research project. Atesa had a personal interest in hip dysplasia and wanted to learn more about this condition, so she read about hip dysplasias and some of our Miles4Hips stories and also interviewed three individuals with hip dysplasia to learn more about their experiences. Atesa educated her teachers and classmates about hip dysplasia by sharing what she learned during her final presentation.

On this Champion page, Atesa shares more about her interest in hip dysplasia and summarizes the results of her project. Miles4Hips provided guidance for this project and we helped Atesa identify resources to achieve her learning and project goals. Please note that the actual project was completed under the direction of her high school program, and the content shared has not been reviewed by our board or medical advisor for accuracy. Keep in mind that the viewpoints shared reflect those of the three individuals Atesa interviewed and may not be common to all patients with hip dysplasia. 

We invite everyone to enjoy the information Atesa learned and shares, and we encourage anyone with questions or concerns to visit our resources page or the IHDI website for additional information about hip dysplasia or to discuss them with your doctor.

Atesa’s Project

I planned to complete an internship focused on hip dysplasia in order to deepen my understanding about the condition and gain insight into individuals’ experiences with it. What led me to this topic is the fact that my mother struggled with hip dysplasia all her life. She had numerous surgeries from when she was an infant until the age of 32 when she had a total hip replacement. Throughout her life she has been in a great deal of pain even after her final surgery. I had mild hip dysplasia when I was a newborn. Due to my mother’s advocacy, I was tested 3 times until an issue was apparent. My hips made clicking sounds. I wore a pavlik harness for one month. If it wasn’t for my mom, I would have never received treatment meaning the condition of my hips could have been much worse.

Furthermore, by doing this project, I wanted to find out whether or not others have had difficulty getting a diagnosis for their hip dysplasia because in my mother’s case, she didn’t get a proper diagnosis until she was an adult, and in my case, my mother had to insist the doctors to test me multiple times to make sure I don’t have the same condition. Therefore, I was curious whether others have been in similar situations. 

I wanted to learn first account stories of people with hip dysplasia aside from all the other research I planned on doing. This is why I interviewed three individuals. Individuals A, B, and C. To prepare for my interviews I created a set of detailed questions to get the conversation going. The three individuals I interviewed also allowed me to record the conversation so I could come back to it and take more notes. 

As I worked on my project, I produced a document consisting of all my research, interview questions, interview notes, findings, and takeaways from everything I learned about hip dysplasia as well as the individuals I interviewed. I learned that hip dysplasia is very complex and there are a variety of types and risk factors. I didn’t think it was common for individuals with hip dysplasia to have such disastrous experiences. As I analyzed my notes, I noticed how many individuals have been misdiagnosed or their concerns weren’t taken into consideration by physicians. Doctors say that even though they hear a clicking sound of an infant’s hip, they don’t flag it because it’s common and will heal in the future. Unfortunately, this isn’t the case for many. Furthermore, I thought that there would be new treatments or surgeries that could take away most pain and hip concerns of an individual in this modern age of medicine, however, this isn’t the case. Many individuals have numerous surgeries yet they still have to live with pain for the rest of their life. Even people who have been diagnosed as an infant and gotten treated by a Pavlik Harness or Spica Cast still face hip struggles as an adolescent or adult. Something interesting I also noticed is what a lasting impact hip dysplasia can have on the individual mentally, as they often get reminded of the terrible moment in their life when they had to endure such pain. For instance, an individual I interviewed said that she hates coming home even though she deeply misses her family because her house is a reminder of the terrible time in her life when she was recovering from her surgery. Another example is how my mother hates fluorescent lights because it reminds her of being alone in the hospital at a young age. 

Overall, there are some takeaways/patterns I noticed from my research and the individuals I interviewed:

  1. Misdiagnosis or Delayed Diagnosis:
    • All three individuals experienced initial misdiagnosis or a delay in receiving the correct diagnosis. Individual C’s journey involved several incorrect diagnoses before discovering she had hip dysplasia. Similarly, Individual B’s initial doctor was unfamiliar with hip dysplasia, leading to a misdiagnosis. Individual A faced challenges in finding a specialist who understood her condition, resulting in a delay in diagnosis.
    • Causes:
      • Hip dysplasia can be a complex condition with varying presentations and severity, making it challenging to diagnose and treat effectively.
      • The condition may be associated with other issues such as labrum tears or femoroacetabular impingement (FAI), which can complicate diagnosis and treatment plans.
      • Also, physicians and general practitioners may lack specialized knowledge or training in diagnosing and treating hip dysplasia, leading to initial misdiagnoses or delayed diagnoses.
      • Without proper training, medical professionals may not recognize the specific symptoms of hip dysplasia, resulting in a failure to provide an accurate diagnosis or appropriate referrals.
  2. Difficulty Finding Specialized Care:
    • Each of the individuals struggled to find medical professionals with expertise in hip dysplasia. Individual C had to consult with various doctors and surgeons before finding appropriate treatment. Individual B’s journey involved consulting different specialists and eventually needing surgery in New York. Individual A experienced challenges in finding the right care and expertise in treating her condition.
    • Causes:
      • Access to orthopedic specialists or surgeons with expertise in hip dysplasia may be limited in certain regions or healthcare systems. This can make it challenging for patients to find the right care.
      • Patients may have to travel long distances or wait long periods of time for appointments with specialists, prolonging suffering and delaying effective treatment.
  3. Challenges with Mobility and Pain:
    • All three individuals experienced challenges with mobility and ongoing pain due to their hip dysplasia. Individual C’s pain prevented her from walking and affected her ability to dance. Individual B faced significant pain and mobility issues, impacting her ability to continue dancing. Individual A’s condition also limited her mobility and enjoyment of activities like hiking.
  4. Impact of Mental Well-being:
    • I also wanted to highlight the mental impact a condition such as this can have as it is often forgotten. Hip dysplasia affected the mental well-being of all three individuals. Individual C experienced depression, and isolation due to her condition. Individual B faced frustration over giving up dance and challenges with missing out on activities with friends. Individual A found her condition discouraging and faced limitations in her ability to enjoy recreational activities.
      • The difficulty in finding a proper diagnosis can also impact one’s social and professional life.
  5. Support Systems:
    • Each individual found value in supportive relationships. Individual C found strength through advocacy work and her relationships with healthcare professionals. Individual B surrounded herself with empathetic people who supported her. Individual A’s husband provided her with consistent support throughout her journey.
      • Friends who make you feel less for missing plans or pressure you into participating in events with taking your pain into consideration are not worth keeping.
  6. Awareness and Advocacy:
    • All three individuals emphasized the importance of advocating for oneself and seeking a proper diagnosis and treatment. They recognized the need for greater awareness and education about hip dysplasia, both for patients and medical professionals.
      • Due to the complexity of hip dysplasia, individuals need to advocate for themselves to ensure they receive an accurate diagnosis and appropriate care.
        • Often times when a problem isn’t completely visible, it is not taken into consideration however you mustn’t be afraid to ask questions. If you believe their is something wrong, you must tell the doctor.
        • It’s also important to advocate for your family or your children. If you have concerns about your family history, let the doctor know.
      • A lack of awareness among healthcare professionals and the general public can make it difficult for patients to find support and understanding.
  7. Life Adjustments:
    • The individuals had to make significant life adjustments due to their condition, such as changing career goals, giving up activities they loved, or modifying their daily routines. Their journeys also impacted their future plans, including career paths and goals.
      • This can heavily impact the individuals mental well-being.

Besides all of the takeaways I learned, this project also personally impacted me in many ways. Not only did it make me more aware of the condition hip dysplasia, it also educated me on the importance of advocating for yourself and others, gave me an interest in the field of Orthopedics, and helped me speak in a professional manner while conducting my interviews.

I would like to thank Miles4Hips, Nancy Muir, and Meryl Strehl for giving me this wonderful opportunity of diving into the world of hip dysplasia!

Disclaimer: The information on the Miles4Hips website is meant for informational purposes only. While our goals are to promote understanding and knowledge of hip dysplasia and to empower patients and their families in healthcare decision making, we cannot guarantee accuracy or appropriateness of the information for your specific condition or circumstances. The information on this site is not meant to take the place of the professional judgment of your medical providers. Individuals should always seek the advice of your physician/surgeon, physical therapists, and other qualified health care provider with any questions you may have regarding a medical condition or treatment. Individuals should never disregard the advice of your medical providers or delay in seeking it because of something you have read on this website.