Caregiver Corner – Scott K.

1. What is your relationship to HPP?

I am Scott, and I am a husband, best friend, and caretaker to my wife, Diana, who has hypophosphatasia. Besides being a caretaker, I am a full-time mechanic for the city where we live. My job is aware of my wife’s illnesses, so anytime she has something going on where she needs me, I can be there for her.

2. What was the HPP diagnosis journey like? 

We only found out my wife has HPP last October, after a long and difficult road to diagnosis. She had experienced challenges throughout her life, but everything changed in 2020 during COVID. She began having pain from the waist down so bad that I did not think there was a name for it. We went through countless X-rays, MRIs, CTs, along with visits to multiple doctors and trips ot the ER. At first, we were told it was severe arthritis or other possible conditions. Eventually, she was diagnosed with avascular necrosis (AVN) in both knees, and we finally thought we had an answer. Despite medications, surgeries, and physical therapy, nothing improved. That’s when her doctor had that light bulb go off. He made calls to other doctors who specialized in different areas, determined to find the real cause.

3. What has been your biggest challenge as a caregiver?

Some of the challenges of being a caregiver are balancing work life with home life and putting her care above all. I would say my biggest challenge is not knowing what I can do for her when she is having what I call “one of her bad days”, where her pain levels are through the roof. Then there are the days when she just doesn’t feel well, and no matter what I do, nothing helps.

4. How do you practice self-care? What resources do you find helpful? 

Self-help…I spend time with the family. We go fishing. I would go to events like the fair and motorcycle shows. I sometimes just go out to see the grandbabies or our friends, too. Her doctors and our family have been our biggest resources. Most recently, Alexion and PantheRx have been added to that list in supporting us.