Patient of the Month- Tamra M.
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My name is Tamra M., and I am blessed beyond words to have been selected as Patient of the Month for Soft Bones.
For most of my life, I felt like a nomad—like I belonged on the “Island of Misfit Toys.” What was often chalked up to quirkiness or artistic temperament later revealed itself to be something more. From a young age, my mother noticed I could hear a song and play it back instinctively, even without formal training. I credit her for recognizing that gift and helping me develop it in ways that suited my unconventional learning style. My late father, who was deaf, used to joke that I had inherited all the hearing he tragically lacked.
My father’s health story feels like an important place to begin. He was born into an Amish community and developed spinal meningitis as an infant, which caused permanent hearing loss. Now that I understand our genetic mutation, I believe this may have been related to the infection crossing the blood-brain barrier. Despite his health challenges—including seizures and heart issues—my father was an extraordinary person. He was deeply intelligent, quick-witted, compassionate, and loved by many. He read lips effortlessly, loved Elvis (he could feel the vibrations of his low voice), and carried a joy that stayed with him through hardship. He loved God deeply, and I still hear his voice reminding me to “be patient.” We lost him before he reached the age of 50, when I was just 14, and his life and loss remain an integral part of who I am.
As my own symptoms worsened, I knew I would have to advocate fiercely for myself. Armed with my family history and growing concerns, I set out to uncover what was “wrong” with me. Despite clear symptoms, I was frequently dismissed and gaslit by medical professionals when tests appeared “normal.” I was labeled as drug-seeking and even implied to be psychosomatic by a surgeon who I had to convince to remove mesh that had previously been placed in my body. It was a long, exhausting, and discouraging journey.
I would not be where I am today without God, the support of my family, and my incredible care team at the Cleveland Clinic. Dr. Cleaver listened to my experiences and never made me feel dismissed or “crazy”. She referred me to Dr. Abuyakoub, my rheumatologist, who I often say pulled a “Doctor House”—advocating relentlessly for answers while treating me with respect and kindness until we found a resolution. I will always be grateful for their care.
The Soft Bones Foundation also played a vital role in my journey. From the moment I was welcomed into the community, I was met with understanding, connection, and compassion. Soft Bones provided a safe space where I felt seen and supported, along with valuable resources that helped me better understand my diagnosis and navigate life with HPP. That sense of belonging has meant more to me than words can express.
I have now been on Strensiq® injections for nearly two years. After initial hesitation and fear, treatment has become part of my daily rhythm, allowing me to maintain my quality of life and be the best mother, wife, friend, and version of myself that I can be. I never take that for granted.
My daughter has also been diagnosed with HPP, and my prayer is that increased awareness, support, treatment, and resources will provide future generations with an even better quality of life—and most of all, hope. God made us special, and we deserve to be seen, heard, and cared for.
Thank you for reading my story and for supporting a cause that brings encouragement and dignity to so many.
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