Huntington’s disease took so much from my family

Porcia White and her husband, Jamie, found out together the results of her genetic testing for Huntington’s disease. (Photos courtesy of Porcia White)

This is Porcia White’s story:

Huntington’s disease was a part of my life from an early age. My earliest memory was sitting against the wall of my Uncle John’s hospital bed when I was 3 years old. He died shortly after.

I never met my paternal grandfather, but he had died of Huntington’s disease. He and my nan, Peggy Dervey, had five children: Jennifer, Jackie, John, Sue, and my mum, Jayne.

Standing from left, Peggy Dervey (Porcia’s nan) and White at 17 visit her mother, Jayne Gibbons, at a care home in Cerne Abbas, England.

I grew up watching my two aunties and my mum become symptomatic with Huntington’s. Mum died when I was 17, the last of my nan’s children to do so.

I lost my nan when I was 22, and for years following her death, I felt hopeless. At 32, I started to experience “twitching” — my legs would spasm and kick out — and I thought I was starting to share the same fate and diagnosis as my family.

I contacted my doctor and started the process of genetics counseling. I had a 50/50 chance of having the disease.

On Aug. 7, 2020, we arranged a call for my results. Before the call, I sat in my car and videoed myself. I wanted to remember what it felt like not to know if I had Huntington’s. I told myself that no matter how bad it could get, I always had the life I did up until then.

Porcia’s mother, Jayne Gibbons, and her uncle John Coe hold White’s sister when she was a baby.

I went home and sat with my husband, Jamie, waiting for the call. I answered the phone.

“You are not at risk of Huntington’s disease.”

I screamed. My body had no other reaction. All of the grief, guilt, relief, and shock was vocalized, and the counselor let me sit with it until I could speak again.

There were, and still are, a lot of feelings around my negative result. Huntington’s took so much from my family, but it has helped me find joy in everyday life. I live the life that the generation before me hasn’t had the opportunity to live. I feel like I would’ve still taken that stance even if my test had come out positive.

After getting my test result, I changed my career. I started studying science and went back to an entry-level role to start working in environmental work, something I love.

One evening, I ran outside to take photos of an incredible rainbow that covered the entire skyline. Sometimes it feels lonely to be where I am, but in times like that, I just feel lucky to be able to see something so beautiful.

In recognition of Huntington’s Disease Awareness Month in May, the Huntington’s Disease Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Huntington’s, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #HDSpotlight, or read the full series.