Caregiver Corner – Cindy P.

1. What is your relationship to HPP? Who do you support? 

My husband, 2 children, and 3 grandchildren have HPP.  Before we knew anything about HPP, I felt so desperate and panicked watching my husband’s health deteriorate. I remembered lying in bed at night, making sure he was breathing, because I was so afraid we wouldn’t have a tomorrow. We learned finally about HPP because my grandson was diagnosed, and at that point, all of the puzzle pieces fell into place about Donnie’s illness. Even though there was no treatment, at that time, we had an answer to what we were dealing with. The symptoms varied throughout our family. I wasn’t really sure how to support my family, other than being here when needed, and trying to stay as educated as possible. 

2. What has been the most rewarding aspect of being a caregiver?

The most rewarding aspect of being a caregiver has been witnessing the development of a treatment that I never thought would happen in my lifetime, and watching how it has made such a tremendous difference in my family’s life! I recall when we got our first shipment of Strensiq®. I was so overwhelmed with emotion. My 92-year-old father-in-law asked if he could see it. I remembered him holding that box of Strensiq® in his hands, as if it were the most important thing he had ever held before in his life.

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

The most challenging aspect of HPP is the unknown, not knowing what this disease may bring in the future.

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

Softbones has been the most amazing resource for support and information. I could not sing the praises of everyone involved in this group!