Soft Bones HPP Advocacy: It’s All About Family

Hello everyone, my name is Sharon T., and my husband Dave has hypophosphatasia (HPP). He and our family have paid a price in our HPP journey through hours of hospital visits and years of patiently studying this disease in every way. We’ve made it through hospital trips for broken bones that we have no idea how he fractured, repeatedly requesting doctors look up Hypophosphatasia, and asking them to do some X-rays when they don’t have a clue how to handle Dave’s case. These experiences and more have all been par for the course in our HPP journey. Our daughters have joined us in that journey by caring for Dad on bad days, educating doctors about HPP, and helping him to get in the right position for x-rays because the techs don’t realize the severity of his condition.

Dave and Sharon T.

In reality, Dave has been educating people his whole life about HPP by example and word of mouth. As we’ve been married, I’ve gradually joined him as I came to realize how important understanding HPP is for us and especially in the last few years through the internet, searching medical journals, as well as connecting with Soft Bones through their website, Facebook page, and groups I have learned a lot. Our daughters and Dave joke about the fact that many women are reading magazines but I am reading yet another medical journal.

Bending over backwards to advocate for HPP. The shirt says “We are stronger in the places where we’ve been broken.”

Our daughter Rebekah joined us in this journey primarily in 2008 when we discovered Dave broke both femurs 6 months apart. The first femur break we waited 8 hours to get into an ER room to be seen because we needed to go to a hospital that might have a clue what to do with him. I was totally exhausted when X-ray time came and Rebekah took over advocating for what treatment and accommodations he needed for the X-rays. She also went to great lengths in driving slow enough for the bumps on the highway as well as caring for her Dad at home the next day while I took her sister to the ER because she was sick!

Rebekah also joined me in attending the American Society for Bone and Mineral Research (ASBMR) sponsored meeting last September to advocate for HPP with Soft Bones. She was a part of the technology information that helped Soft Bones go on Facebook Live the first two times in its history! Such exciting times! Rebekah also went for coffee and food when others were volunteering at the booth and couldn’t get away. She always has a heart to help and be a part of the team whatever that looks like.

Rachel has joined her sister in advocating for HPP with social media. She is probably best known for her Pinterest Board for Soft Bones Hypophosphatasia which has almost 200 pins currently! Both of our daughters have extensive knowledge about blogging, hash tagging, and social media and have advised me about quite a bit on social media in the last few months. They helped me learn to encourage others with the knowledge of how to hash tag for Soft Bones and HPP as well as learning how to use Facebook, Twitter, and Instagram. Rachel also helps with Dave’s care on rough days and she has her Dad’s sense of humor as well as gift to laugh and make him laugh. When Rachel is present there is joy in the house.

Our daughters are some of the first people to advise others on health care issues around them, jumping in when there is an emergency and instructing others what to do when their loved one is in the ER or the hospital. This is because we all believe that bringing purpose out of our pain is part of what makes this HPP journey worth it. It is so amazing to be able to connect with others around the globe to inform them about HPP and what they can do to treat their disease or symptoms depending upon where they’re located on the global map. Soft Bones has been a huge part of our journey and we look forward to working with them more in the next season of our lives.

Sharon T.
Sharon My Life on Blogspot

For those who have asked, you can access the update on Dave through his Hope Help Live page. Thanks to all who have helped us with the Wheelchair for Dave project!

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