Patient of the Month- Rachel S. and Christine S.
Instead of Rachel and I (Christine) writing two separate stories, we thought that since our lives are so intertwined, it is best to write it together.
We run a successful Speech Therapy Agency with about 80 employees. We each have two children that are more like brothers and sisters to each other. We are both recently diagnosed with HPP. I am taking Strensiq, but her (Rachel’s) insurance did not approve her prescription yet.
At birth, I spent weeks in the hospital for having collapsed lungs while Rachel was sent home. My parents did not know they were having twins, which I am sure was a big surprise. We had odd, shaped heads and were always very small and slow to grow. Rachel and I looked like we were 10 when we were 16. We both had delays in speech and walking.
As weak, small children we were constantly bullied in school. Wearing back braces to keep our scoliosis from worsening certainly did not help with our popularity. We both have ADD, but back in the 70’s and ’80s in Staten Island, no one thought to look for it. Rachel was dyslexic and was in special education for many years.
In my 30s I decided to have my spine fused to look and feel better (I had a hump on the right side of my back) about my appearance. Well, that didn’t stop scoliosis from worsening, shrinking half an inch per year, and I needed a second surgery with more levels fused at the age of 40. My surgeon said, “your bones are very soft for someone your age”. But no one knew about HPP, so they ignored it. At the same time, I was also diagnosed with fibromyalgia, and I get, on average, 3 to 4 migraines per week.
Rachel broke both of her wrists while at a birthday party; they were surprised because her non-dominant wrist also broke. Her wrists never completely healed. She also broke her tailbone but never felt the pain. Her jawbone is very weak and aches constantly. She was missing some adult teeth and needed an implant. Her jaw bones immediately pulled away from the implant, causing severe pain and for it to fall out.
We are running a company, Legendary Therapy, and raising kids. Me, a single mom for the last 15 years with two teenage daughters, and Rachel with two young ones, a 6 and 10 year old.
She has brain fog, so I help her compensate by giving her a to-do list. When I have brain fog, my compliance officer Julie helps me by going through everything I need to do with me. Talking to her about my tasks helps tremendously. She knows I appreciate it even though it’s not in her job description. We are so glad we found Soft Bones and now have a community to talk to. We are no longer silent with our pain and frustration.
My 16-year-old daughter, Morgan, has many health issues that worry me. I am taking her to the geneticist to get tested for HPP. She can no longer play sports because she has degenerative disk disease. Her Fontanel closed prematurely, but her hair covers the misshaped head. She also has scoliosis and goes to PT weekly. Morgan is an EMT and works hard in school.
I am proud of what the two of us have accomplished. Rachel is a speech therapist, and I am an Occupational Therapist. We never take time off from work even though there are many days when we feel sick. Maybe it is our company that has kept us moving forward.
If you would like to make a donation to Soft Bones in honor of Rachel and Christine, please click here.