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Grace Leonardi

Here is the second interview I have done. Grace's story is like many other peoples so I thought it was important to share. She is such a strong and resilient girl and I admire her very much. 

So, heres her story... 

When were you diagnosed? 

 

Early December, 2015. I was 13 years old when I found out. 

 

What were the symptoms and events that made you go to the doctors/ hospital?

I first went to my primary doctor in September of 2015 when my right hip was popping out of place and it had been hurting for a long time before September. It started hurting in May of 2015, but I did not tell my mum until September. The doctor said to rest from sports and see if it helps, I do competitive cheer, gymnastics and also love to run. After that it was still very sore so I went back to my primary doctor and he referred me to a sports specialist for injuries. I went to him in early October and that doctor said to do physical therapy and no sport but the pain continued so I went back again to the sport injury doctor. He then referred me to a hip doctor/ orthopaedic surgeon. I went to him in early December. 

 

What did the doctor do to diagnose you?

They measured my MRI’s to see the angle of my femoral head in the hip socket and also referred to my x-rays. The hip doctor looked at them and diagnosed me. 

 

What did the doctor recommend?

After the physical therapy made the pain worse I got a steroid injection and that again did not help. Then I was scheduled for hip scope and then it got cancelled due to limited OR (operating room) time. We rescheduled it and shorty before that my doctor went to a hip conference in Switzerland, which had some of the best hip surgeons in the word, and brought my case up asking if the hip scope was a good idea or to go straight to a Periacetabular osteotomy. A PAO as its widely known. All of the doctors decided to do the PAO, which was then scheduled for March 8th. 

 

What has been the biggest struggle?

Not being able to participate in my normal things like sports and school stuff. Also I was on crutches from October 2015 to May 2016 so people did not believe I was hurt, would treat me poorly and say very rude things. 

 

What has been the best thing?

Finally getting the surgery and starting physical therapy I felt like I was actually becoming a normal human again and accomplished my small goals like walking with one crutch, etc. 

 

If you could change one thing about your whole experience, what would it be?

I would change the people around me because they did not act nicely. 

 

How did people react?

My friends did not understand what DHD is and the surgery I was having. People at school would call me a ‘faker’ a lot and it really got to me, even some teachers were rude about me missing school and would joke around about how dogs can have DHD. Even teachers would call me gimp and I had to go to the principal and tell him how they were treating me. My overall experience with people was not great and I wish people would have been more accepting of my situation. 

 

Scariest moment?

Right before surgery when they were giving me my epidural they faced me towards the wall where all the equipment was, drills, scissors, etc. It was very scary. 

 

Do you use an aid?

8 months before surgery I used crutches. After surgery I used a wheelchair, walker, then crutches. 

 

What are your goals?

My main goal would be to walk properly and do things more easily like lifting my leg. Another one of my goals would be being able to get back to normal things like cheer and gymnastics, also running if its ever possible. 

 

Has having DHD changed your outlook on the world?

Yes, it has taught me that you should never judge someone, because you are all fighting a battle and not everyone knows what you are going through. 

 

Whats one thing in the healthcare system that is a problem you would like to change?

Continuity of care. 

 

Whats one thing you would tell someone who has just found out they have DHD? 

Things will get better even if they feel like they are never going to, just keep your head up and never let someone tell you that you are not capable of something. 

 

Whats one thing you would tell an able-bodied person? 

Please never tell a person that a task is easy because that task could be one of there biggest goals. 

 

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