Patient of the Month- Carol K.
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Others have told me that I am not the typical HPP patient. What is the “typical” HPP patient? I don’t think they have discovered the answer to that question yet!
I grew up the youngest child with three older brothers. My brothers made sure I grew up rough and tough. They would poke fun at me if I cried when I was injured. I was a very active tomboy climbing trees, playing army, and riding bikes. I began riding horses at a friend’s farm in first or second grade. By third grade, my parents signed me up for riding lessons. I soon became an advance rider, due to the riding experience I already had. During 5th through 8th grade, I became a trainer of ponies and small horses in equestrian and jumping skills at the stables. I fell out of trees and off horses many times. I was also taking ballet, swimming, and tennis lessons at that time.
In high school, I participated in various clubs such as tennis, gymnastics, volleyball, and marching band. By then, I was quite accustomed to injuries in my feet and hands. One day, I was taken to the ER by my gymnastics teacher to discover I had broken my foot. That was my first verified fracture. Looking back, I think I had suffered quite a few foot fractures, but I never went to the doctor. I just kept on, without telling anyone about the pain, thinking it was normal.
In college, I continued with gymnastics, tennis, and ballet. I majored in Physical Therapy. It was a physically active career. I was lifting and moving patients, and working on my feet almost daily. By the time I started my first job, I was already experiencing back and neck pain along with my feet. I bought some orthotics and orthopedic shoes to keep pushing through the pain. It was normal, right?
Around my 25th birthday, my nephew was diagnosed with HPP due to early tooth loss and adolescent foot stress fractures. The extended family was tested, and I was found to have indicators of HPP with early loss of teeth, low ALP, and high B6 levels. I was young, single, active, and didn’t understand what all the information meant, so I promptly forgot about it. I was normal, right?
Fast forward 40 years to when I had to retire at 62. I was experiencing constant fatigue, poor memory, and difficulty with organizational thinking (ie: brain fog). I finally could no longer tolerate the pain in my back, legs, and feet. I was sure I had Chronic Fatigue Syndrome and Fibromyalgia but never went to a doctor (self-diagnosis). I figured I had made it this far, I will keep pushing through it. All normal for my advanced age right?
One of the activities my husband and I began during our retirement was participating in mission trips. We are active in disaster relief by working on mass-feeding teams after floods, tornados, or hurricanes. We also participate in rebuilding homes damaged by these disasters. I have learned to operate many tools, paint, roof houses, install drywall, insulate homes, tile, and flooring of all kinds. We continue to participate with the North Carolina Baptists on Mission and Samaritan’s Purse.
My husband and I decided to retire full-time in the NC mountains where there is plenty of outdoor activities to enjoy. During the moving process, I slipped on the stairs, and EVERYTHING CHANGED! I made sure not to let go of the railing in an attempt to avoid a hip fracture (I was told at age 40 I had significant osteoporosis) and sat down hard on the step. After the feeling returned to my left arm, which I was still holding the railing, I checked my body. All was okay, maybe just a rotator cuff strain…. I did not go to the doctor or the ER. Two weeks later, when the pain did not abate, I went to an orthopedic doctor. The X-ray was negative. I asked for a CT scan. Four weeks after the incident on the stairs, I was told I had a complete non-displaced fracture of the left upper humerus! It was then I remembered the information about HPP, so I got an appointment at Vanderbilt University Medical Center with Dr. Dahir.
Before being seen by Dr. Dahir, I estimated I had suffered around 29 fractures in my life, most not verified by X-ray. I received the official diagnosis of HPP and was placed on Forteo injections. After 18 months of treatment, Forteo was discontinued due to worsening pain in my hips and knees. I just wanted to be in bed. Despite the pain, I continued to push to be active with mission work, riding road and mountain bikes, hiking in the mountains, and river kayaking as best I could. I used hiking poles to increase the strength and range of motion in my left shoulder. The shoulder fracture had finally healed after a year and a half. We also enjoyed two bike and barge trips in Europe. Did you know it is easier to ride a bike with broken toes than walk on cobblestones?
I learned my nephew had found an HPP specialist at Duke in Durham, NC, so I switched to her. Dr. Kishnani prescribed Strensiq. I would need to do five injections/week. After about 6-8 months, I had so much less pain in my bones and therefore more energy. I started training and became certified in scuba diving at age 65! We have continued to learn skills and have completed five more certifications in nitrox, underwater navigation, deep diving, advanced diving, and rescue diving. In addition to our missions, kayaking, biking, and hiking, my husband and I travel internationally to enjoy diving. We have been to Cozumel, Sint Eustatia, the Philippines, and Thailand. We are hoping to go to Indonesia next year when I am 69. The rest of my time is spent learning to paint in oils and acrylics.
I still wake up each morning stiff and, in some pain, especially in my feet, neck, and back. I usually go to bed feeling the same way. My ability to hike distances has become much shorter over the years, as has my biking (hint: an electric assist bike is a game changer). But I continue to fight to be as active as I can be and not dwell on the pain. Moving seems to help the most. Pain medication? I can only take Tylenol for the pain as NSAIDS gave me an ulcer three years ago. The heating pad is my BFF!
The Soft Bones website has been invaluable in supplying me with research materials to educate my local medical and dental community in recognizing and understanding HPP. Through the HPP AND ME forum, I have made new friends. I have shared ideas back and forth with others on coping with issues such as traveling with medications that must remain refrigerated at specific temperatures. I particularly enjoyed attending the 2024 Annual National Patient Meeting in Ohio this summer. It was my very first time talking face-to-face with others diagnosed with HPP. I feel we all have very different symptoms and challenges, yet we have even more things in common with each other.
One major thing I have learned in my life is: Do what you can -the best you can -while you can. And always, be aware of the needs of others.
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