Patient of the Month- Alana S.
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I was born with several health challenges—my chest was caved in at birth, I had pneumonia, and a heart condition. Doctors attributed my chest issues to my size as I was over a month late and weighed 9 pounds, while my mother was very petite at just 5 feet tall. By the time I was around one, I was diagnosed with failure to thrive, weighing only 14 pounds. Despite my mom’s insistence that I ate well, I remained tiny.
As a toddler, I hit developmental milestones early—walking at seven months and potty-trained at 16 months—but health issues started creeping in. My baby teeth came in quickly, and by age four, I was already losing them, much earlier than normal. Even though I took excellent care of my teeth and avoided candy, they were always sensitive and prone to cavities. I was also a very fragile child, easily hurt, and I had frequent kidney and bladder infections. In second grade, I missed nearly the entire school year because of constant illness.
Despite being tough and resilient, I often wondered whether everyone felt the way I did, dealing with unexplained aches and pains. I was diagnosed with arthritis as a child, but that was the only explanation doctors gave me for many years. I broke bones easily—sometimes without any real cause—and frequently tore ligaments and tendons. Still, I pushed myself to continue dancing and cheering because I didn’t want to miss out on life.
As I grew older, my symptoms intensified. Cold weather became unbearable due to severe joint and bone pain, migraines, and muscle issues. By my mid-20s, I experienced new symptoms: numbness in my face, arm, and leg, twitching, nerve pain, and overall weakness. My immune system was also poor, and I was frequently ill. Despite multiple doctors’ visits and countless tests, no one could figure out what was wrong. I was given a variety of incorrect diagnoses, dismissed by doctors, and made to feel like my struggles weren’t valid. The frustration was overwhelming, and I began to lose faith in the medical community.
Through all of this, I remained active as much as possible, even though my body seemed to betray me. I wore braces on my feet, ankles, knees, and hands simply to keep working out because exercise made me feel alive, even with the pain. My injuries were unpredictable—sometimes I would wake up with fractures, or I’d break a bone from doing something trivial. Combined with Ehlers-Danlos syndrome, which causes joint dislocations and tears, it only made things worse. I have had more fractures and breaks than I can count, and my childhood is filled with many memories of being in casts. It’s exhausting, both physically and mentally, but I have never been someone to give up.
Despite the pain, I’ve always loved life. I have five beautiful children and a wonderful husband. I’ve always maintained a positive outlook. However, the uncertainty of what might happen next is terrifying. I am a fighter I will keep going. I’m a mom and a wife, and I run my own business, Mama Alana’s Pantry, selling gluten-free and vegan mixes and baked goods. It’s hard work, but it’s also what keeps me going. Seeing the joy on someone’s face when they can finally eat something safe and delicious brings me so much happiness. I strive to show my children that even in the face of pain and difficulty, we must keep pushing forward.
This past winter, I began treatment with Strensiq after finally being diagnosed with hypophosphatasia (HPP). It took 45 years of misdiagnoses, dismissals, and wasted money before I received the right diagnosis. The pain and frustration were overwhelming, but I never gave up. Since starting Strensiq, I’ve experienced some improvements—my brain fog has lifted, and my energy levels are starting to rise. I still struggle with fatigue and pain, and I’ve had new fractures since beginning treatment, but I’m hopeful. Hope is a powerful thing, and it’s what keeps me moving forward.
A pivotal moment for me was finding the Soft Bones Foundation. From the very beginning, they’ve been an incredible source of support and community. I’ve been blessed to be welcomed into their world, from the opportunities to join Zoom calls and connect with others in the Facebook group, to the unforgettable two-day event in Cincinnati, where I met people like me for the first time. Hearing the doctors explain more about HPP and gaining new insights into my condition has been invaluable. It was as if I was hearing my own story for the first time, knowing that I wasn’t alone in this rare journey. Soft Bones has given me more than just education—it’s given me a community, a place where I truly belong. I can’t express how much of a blessing it has been, and for that, I am deeply grateful.
I am incredibly grateful for my family, my supportive doctors, and the opportunity to raise awareness about HPP through Soft Bones. I want others to know they’re not alone and that they don’t have to suffer in silence. I hope my story can inspire others to keep fighting, to seek answers, and to never give up on their dreams—even when the road seems impossible.
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