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Jessica Porter

Here it is, my third interview. Jessica's story is different to my previous ones because she was born with Hip Dysplasia rather than developing it later in life. I think that many families may relate to this story and I believe that her message is important to share! 

When were you diagnosed? 

I was diagnosed when I was around one year old, my mother was the first and only one to notice it as I started to learn how to walk. 

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

When I was born I was breech but the doctors had to turn me which some people say can lead to Hip Dysplasia. As I started to walk my mother realised that I was limping. She noticed that when I’d sit with my legs up, my legs went in two different directions. My right leg sitting normally and my foot straight up. My left leg was resting unusually to the left and my foot was pointed to the left instead of straight up. However because I was walking regardless and didn’t seem to be in pain, no one believed my mother. 

 

What did the doctor do to diagnose you?

My doctor decided to do x-rays of my hip and also general examinations. He would have me lie down and he’d bend my leg up, and sideways testing the joints. I would scream in pain when he moved it side to side and of course he knew along with the results of my x-rays. 

 

What did the doctor recommend?

He did an Osteotomy and put my hip back into place. Afterwards I was put in a body cast for about 3 months, then I was put into leg braces until I was 4 years old. I had to have a check up in his office annually to do general exams where he’d check the flexibility of my legs and see if I had pain left. Every year I’d go back for arthrograms, they’d use anaesthesia to make me sleep during the x-rays, but that was only when I was younger. During my preteen years it got harder because they no longer did arthrograms they did MRI’s. Getting the iodine injections for those were extremely uncomfortable for me. When I was younger my doctor told me that once I turned 16 he said I wouldn’t need any more check ups annually or MRI’S. I still go occasionally but not annually like I used to. 

 

What has been the biggest struggle?

It has definitely been trying to make myself as comfortable as possible and trying to speak up when I need accommodations. I don’t like people knowing I’m young and disabled so whenever I do need something I rarely speak up about it. I feel ashamed if I do. 

 

What has been the best thing?

The best part about having DHD is knowing how to take care of myself and knowing something about myself that not many people around me have. 

 

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

I would definitely change how my mother reacted to it. I was always afraid to tell her because she’d freak out and become upset, which led to me growing up used to my own pain and never telling anyone. As a child it was very difficult not to tell my own mother the pain I was in because all I wanted was help. Now, however I don’t have this problem. I freely tell my mother about how I feel which I think is because I’m older now and take care of myself for the most part and visit my doctor by myself.  

 

How did people react?

At first, no one believed it was true. Then after surgery my mother was the only one who was around me and paid close attention to me. My father and my older sister always did things without me while my mum would do things to keep me entertained at the house. Because I felt like too much of a burden, it was very lonely growing up in those stages of my life.

 

Scariest moment?

Trying to monitor myself as a young child. If I were on the playground at school and fell I would be extremely paranoid and worried that something might’ve happened to my hip again and I’d start crying asking the nurse to call my mum. 

 

Do you use an aid?

I don’t use an aid all the time but I keep a cane in my car for times when I’m in a great deal of pain. 

 

What are your goals?

I just want my hip to feel good when I go into my career and to know it won’t be holding me back. However I can do that, whether it would be medication or surgery or weight loss, thats all I want, is to never let it get in my way like it is now. Aside from the disability I want to finish college and become a radiologist (irony) and be overall happier with the cards I’ve been dealt in life. 

 

Has having DHD changed your outlook on the world?

I’ve never thought about this until now but yes it has. It’s made me way more aware about people with disabilities and made me realise all the ableist things I had to unlearn that I was taught at a young age. I used to judge when I’d see a young person coming out of a car in a handicapped spot, but now I am that person as well. It’s defiantly taught me to be compassionate and caring, just by seeing my mother take care of me my whole life. I look at things in an optimistic attitude now because if I can manage my pain and have been through all that I did, my other problems seem minuscule in comparison. 

 

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

It’s a problem to me that my doctor refused to prescribe me high pain medication because of my age, when really I’d only need them when my pain is too much for my regular medication. It’s like, what am I supposed to do? Waste my regular medication and be bed- ridden all day? Also the fact that they wouldn’t give me a permanent disability placard for my car. I’m not temporarily disabled so I don’t understand why my physician would only write me a temporary placard. The healthcare system seems to only cater to older patients with common diseases. The second that you’re young with disability you don’t get taken seriously. 

 

What's one thing you would tell someone who has just found out they have DHD? 

I would tell them to NOT BE AFRAID TO SPEAK UP and not be afraid for people to accommodate you. In the long run, you’re going to have to deal with this for the rest of your life, so it’s best to not hold back when you need something. Also, be patient with your body. For many years I hated my boy for putting me through so much pain and heartache but I am better for it, and your body should be taken care of and appreciated no matter how much you think it mistreats you. Trust me, it will be hard for many years and just when you feel like giving up, please remember that there are in fact other people like you, even though it doesn’t seem like it. The online community is such a great thing!! Look into it and make yourself know and reach out to other people who have Hip Dysplasia. But most of all, good luck and take care of yourself in any means necessary.

 

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

I always want to tell able-bodied people that they take their healthy bodies for granted. So please, take care of yourself and appreciate what you have been given. Not everyone, no matter what age, was dealt a healthy body. Be aware of us and our needs and be aware that there is a huge flaw in society about how we view disability. Educate yourself and hopefully through that you will be a little more compassionate to people with disabilities and learn to appreciate your body more.  

 

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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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Kaylee Bauer

Since it’s coming to the end of Hip Dysplasia awareness month I wanted to introduce a new style of blog post that I will be doing. 

 

I’m going to be talking to different people and asking them the same 15 questions but the answers are very different. 

 

The first persons story I will be sharing is Kaylee. She is one of the first people I met on the internet and I find her story quite intriguing. She has not been officially diagnosed because she has something the doctors have never seen before. 

 

So, heres the interview I did with her and here are her answers. 

 

When were you diagnosed? 

Early January 2015 

 

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

 

I started getting sharp pains in my hips. Then in mid January I collapsed at school due to the pain. By this time I was always hurting, but I would get horrible sharp pain that went from my lower back, to my hip, down my leg. In February I went to two different doctors, then I went to a bone specialist that I had been to in the past when I broke the growth plate in my foot twice. 

 

What did the doctor do to diagnose you?

 

An x-ray then he sent me for an MRI arthrogram on both hips. Left hip came back fine but my labrum was torn in my right hip. Then I went to a children’s hip specialist and he did further x-rays and CT scans. Then I went to another hospital who had a team of hip specialists and two surgeons. They were in awe and said they had never seen this before, but agreed to take the case. My labrum was severely torn, ball & socket was rubbing bone on bone and my pelvis was tilted down, causing spine problems. 

 

What did the doctor recommend?

He had already started me on anti-inflamitory medicine and I had already been to four weeks of physiotherapy. They offered a spinal fusion to fix my spine problem but that would leave me paralysed, so I opted to just live with that pain. I had surgery on the 18th of August 2015 where they fixed my labrum tear, shaved 1/4 of my bone off from my ball & socket, cut my femoral head in half, to reset my hip and put two screws in. I was in the hospital for four days and on bed rest for two months. Had to relearn everything and I started physiotherapy in October 2015. The second surgery was in January 2016 to remove the hardware. 

 

What has been the biggest struggle?

Not being able to be the 18 year old I am, like I can’t keep a full-time job due to hip pain and complications. 

 

What has been the best thing? 

It has definitely made me stronger and made the bond with my family so much stronger as a whole. 

 

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

When I was deathly sick and needed the NJ feeding tube. But if I didn’t have to change anything, I wouldn’t because its made me who I am today and I’m a lot stronger. 

 

How did people react?

Not like I had hoped. My friends dropped me because I was what they called ‘crippled’ and ‘no fun’ to be around because I was bed ridden. My family and I got extremely closer throughout this journey though. 

 

Scariest moment?

When I fell in September. I was taken to hospital and they admitted me for pain control. I then told them I hadn’t been able to eat or drink in two weeks, they weighed me and I had lost 12 pounds. They put an NJ feeding tube in and that literally saved my life, I was knocking on deaths door. 

 

Do you use an aid?

I do not have an aid that I use daily but I do have my crutches and wheelchair that my doctor said to use if I have a bad pain flare. 

 

What are your goals?

One of my biggest goals is to be able to have a full time job and of course run, hike, dance and all of that fun stuff. 

 

Has this experience changed your outlook on the world?

Yes it has and my mood has changed. Just because someone doesn’t look sick, disabled or in pain it doesn’t mean that they aren’t. I’m also so grateful for everything. 

 

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

I wish doctors would listen to you the first time you tell them that something is really wrong with your body. We know our bodies better than anyone else. 

 

Whats one thing you would tell someone who has just found out they have something similar to you?

Don’t give up. Yes, it’s hard, very hard and we get aggravated at our bodies and always ask why, but that it will get better. Just have faith and stay strong. 

 

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

Don’t take being able to walk and run for granted. Please don’t. 

 

Kaylee fell in April and was admitted again to the hospital for pain control and is currently doing another six weeks of physiotherapy. 

 

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