Patient of the Month- Morgan S.

Hello, My name is Morgan Salomon, and I am 16 years old, and I’d like to tell you a little bit about me and my journey with HPP. Just letting you know, I haven’t been formally diagnosed with HPP, however, a metabolic physician told me that it is highly likely because my mom and her identical twin (My Aunt) have been diagnosed with it. I have many medical issues that indicate this as well.

Since birth, I have been told many good and bad stories. I’ve been told of the many surgeries I had during my first year of life and the strange occurrences. Some of these include surgery to reconnect the tubes that go from my kidneys to the bladder after having a severe illness for many months. My mother told me that my fontanelle closed earlier than supposed to. I always thought these were random occurrences of the life of a random child, but indeed they were not. I have ridges on my teeth, creating a yellow appearance that will forever be there, and I can’t whiten them because they would be uneven. I wanted to have perfect teeth like all my friends, especially after everyone had braces and their teeth were white and straight, unlike mine.

At 14, I had just been starting high school and going to physical therapy for scoliosis and strengthening issues. At the same time, I began playing tennis for my school’s team and outside of school. This is the year my leg started getting weird flashes of pain; it was so unbearable I had to go home and lay down in a special position to make it stop (but it never really stopped). Even through all of this pain, no one believed me. I was going to physical therapy twice a week, and I could walk perfectly, therefore no one believed me.

 

About a year later, we decided to get an MRI, and we discovered I had four herniated discs in my back, pushing on my nerves. I had Degenerative Disc Disease at 16, a disease regularly diagnosed in 30-year-old women. At this point, I was limping due to pain and had severe nerve impulses in my left leg. I began going again to a physical therapy rehab center for severe pain; we worked on strengthening, stopping the nerve pain, and flexibility of my legs.

By the end of my Sophomore year of high school, I couldn’t play my favorite sport anymore (tennis). I couldn’t even walk a block without pain. At the end of my sophomore year I started taking a class to become an EMT. This was one of the most challenging classes I have ever taken, and I had insane work to do. I spent every night making notes, studying, doing practicals on my family, and practicing blood pressure on my mom; it was a lot. 

After going to an ER for intense pain and getting an MRI, I had emergency surgery on one of the herniated discs as I could no longer walk. I spent 3 days crying, not eating, taking narcotics for the pain, and fainting due to dehydration. But on the 4th day, I got up and went to class. That Summer, I became Valedictorian of my EMT class. 

During the same few months at the end of my sophomore year, when I was in severe pain, I also experienced lots of troubles in school before the surgery. I was doing very poorly, couldn’t read well, and had severe anxiety and depression. I was not in a good place, especially with all the pain. 

I have an auditory processing disability in which I forget words very quickly, ADD makes it very hard to pay attention, and I indeed have anxiety/depression. I immediately started medication for both, and we went to my school to try and get a 504 plan to accommodate my needs. 

I have had many medical issues in my short life, and I know almost everyone reading this has too. But, when my mom, who has gone through even more than me, discovered HPP and the resources available to her, I was happy. After taking an EMT class, I spoke to her about her medical problems, and I never knew how the diagnosis affected her quality of life. People with HPP look fine to an outsider.  

If you would like to make a donation to Soft Bones, in honor of Morgan, please click here. 

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