Patient of the Month- Amedie P.
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Hi!! My name is Amedie. I am happily married, and we have two beautiful adult children. My son (23) is away at college, working towards a degree in education and playing college baseball, and my daughter (21) has her own home and a great job and is also working towards a degree in education. She is also 6.5 months pregnant and about to make me a grandmother. I couldn’t be more excited!!
From a young age, I exhibited several signs of hypophosphatasia (HPP). I had scoliosis, broke at least one bone a year, and walked with a waddle. I’ve struggled with dental issues for as long as I can remember. I was a very active child, so it was easy to look past all of the symptoms but I always felt sore or in pain. I played softball, cheered, showed livestock, rode horses, and participated in many other activities, so when I complained about discomfort, my parents assumed it was simply because I was so active and was just tired.
Moving forward to my adult life. I had no problems throughout my pregnancies but around the age of 30 I went through a rough divorce and that’s when I began to realize that something was wrong with me. Mentally, I was depressed and full of anxiety, and physically I felt so much worse. I started having tons of health issues. I guess the stress of it all just escalated my symptoms. For over a year, I went from one doctor to the next to figure out what was causing all of the pain and other symptoms to no avail.
In 2012 I was a single mom who felt too bad to even go out to meet anyone so I decided to try online dating. Long story short I met the man I am married to today soon after. He is more than I could have ever asked for or even imagined as a husband and father to our children. He is the most compassionate person I know and he has stood by my side and supported me from the day we met. I often wonder how he is still here after all of the madness my life with HPP brings to the table but I am so very thankful he is and I definitely wouldn’t be who I am today without him.
In 2017 I saw a rheumatologist and he found that I had a high antinuclear antibody (ANA) count so he diagnosed me with fibromyalgia, gave me a prescription for hydrocodone (as needed), and told me there wasn’t much that could be done. I continued to have fractures and several other symptoms that didn’t make sense and the pain meds made me feel so much worse.
In 2018 my primary care doctor retired so I needed to find a new one. I had seen the same doctor most of my adult life so this was something I was nervous about. I remembered that my late grandmother had a primary care doctor that she loved, so I decided to try to get an appointment with her. Unfortunately, she wasn’t seeing new patients, but she had a nurse practitioner who could see me. Being that his office was right down the road from my job, I decided to go ahead and see him.
That’s when everything changed!
At my first appointment, he sat with me for over an hour and he went over every aspect of my health history from birth till the current time. He agreed that he didn’t think I had fibromyalgia and assured me that he would get it figured out. Two days later he called late one afternoon and told me that he was pretty certain that I had HPP. We did the DNA testing and confirmed my diagnosis. It felt so good to know that I had someone who truly cared watching over my health, not to mention the idea that I finally had an accurate diagnosis. I started researching and realized that HPP was a super rare disease and there wasn’t very much information to be found. Again, he assured me he was there to help and that we would figure it out.
I have seen pretty much every kind of doctor before my nurse practitioner diagnosed me so many years ago and no one has even come close to having any desire to research or learn about HPP. He has truly been a lifesaver and continues to work with me every time things get worse or a new symptom shows up. He has since diagnosed four more people and continues to study and learn everything he can about HPP. Now, he wants to teach other doctors and nurse practitioners about what to look for and how to diagnose HPP. I’m going to help him to do that, which just assures me that I am exactly where I am supposed to be
During my research, I found the HPP Facebook page and requested to follow it, hoping I could find some answers. Within an hour Sue contacted me and we talked for hours. She had so much knowledge and answered all of my questions. I can’t express enough how helpful this was as there wasn’t any information online at the time.
Thanks to her help, I was referred to a doctor in Nashville TN. I was so hopeful and excited to finally have a doctor who was familiar with HPP. This doctor was kind and so very helpful. She put me on Strensiq which was super scary. Giving myself shots was not something I ever saw myself doing, but if it was going to make me feel better it would be worth it. I had no problems getting my insurance to pay so I was able to start therapy right away. I was so hopeful, but to be honest it was awful. I spent every minute of the day worrying or thinking about having to do the injections, and when I did them they hurt so bad. After 6 months, I felt that the injections were making me feel worse. I wanted to give up but she convinced me to stay on it for at least 6 more months. If I didn’t feel better or feel like it was helping after those months, she would be okay with me stopping the treatment. Unfortunately, after a year and careful consideration, she allowed me to discontinue treatment. I often wondered if it was the right decision for my future, but I felt it was the best decision at that time.
Now, a little about my recent journey. As a 42-year-old woman who had worked all of my life, my body had given me no choice but to just slow down! I had to stop working 13-hour days at the boutique that I owned and worked so hard to establish. I was spreading myself so thin doing things for others that I didn’t have time to take care of myself. I sold my business and I felt like I had to stop doing anything that I truly loved to do. Though I feel this was the best choice for the future, it has been and still is extremely hard on me mentally. During this transition, our house went from always having at least 3-5 children at all times to just being my husband and me. Being empty nesters is incredibly quiet and boring.
I am now 44 and continue to fight daily, mentally and physically, but now I am doing it with a whole new mindset. Yes, I have HPP but it doesn’t define me. I am a loving mother, wife, and soon-to-be grandmother. My family needs me, and I will do whatever it takes to be around them. If that means taking time to rest and to listen to my body so I can be present and healthy for the future, then I am going to do it.
I believe that everything happens for a reason, and just maybe I have been through all of this so that I can be a better help to others. Going forward I plan to continue to research and do whatever I can do to better myself and to help others in the HPP community. HPP is what we have but it’s not who we are. I am now excited to see where life takes me from here and I pray I can use my journey to help others as they go through these tough times that so many of us in the HPP community have to go through.
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