Caregiver Corner – Cass S.

1. What is your relationship to HPP? My middle son (Jackson) and I both have HPP. We found out my diagnosis in late 2020 while pregnant with my youngest son. We found out about Jackson’s diagnosis in 2021. I support him and myself.

2. Who do you support? I support my son who has HPP and myself. 

3. What has been the most rewarding aspect of being a caregiver? Knowing that there is an answer for our ups and downs.

4. What has been your biggest challenge as a caregiver? It has been challenging to work with physicians and educational leaders that don’t understand HPP.

5. How do you practice self-care? What resources do you find helpful?
I try to take time for myself to get a pedicure, watch a show I want to watch or grab a meal with a friend. Finding people like me— it was a game changer and pretty emotional to be at my first national patient meeting and know I had found my people.

6. Do you have any tips for other caregivers? Advocate for yourself and those you love. You’re your own best advocate. Take time to process and rest. It’s hard to try to keep up with everything all of the time.