Living with Huntington’s disease is a roller coaster life

Lauren holds a Huntington’s Disease Association banner at the Big Half London, a half-marathon. (Photos courtesy of Lauren)

This is Lauren’s story:

Inexplicably, Dad kept us away from Nan, who spent years in a care home. Eventually, Dad tested positive for Huntington’s disease (HD).

After meeting my future husband, I started genetic counseling, and tested positive: my CAG repeat is 46. I will never forget that life-changing moment. It was the news I thought I had prepared for, but my heart broke.

Lauren poses with a flag at charity golf event.

We were referred to Guys St Thomas’ Hospital for the pre-implantation genetic testing process. In total, I had two egg collections and three embryo transfers. After one miscarriage, I gave birth to a girl in 2019, and my second daughter was born in 2022.

HD took away my freedom to have children. Further egg collection and transfer would cost £10,000 plus (at least $12,350) to even try.

My way of coping is to fundraise and raise awareness. We have raised nearly £35,000 (more than $43,000) for the Huntington’s Disease Association UK. It’s an amazing support! I’m looking for training for the next event.

When Dad became symptomatic, he deteriorated quickly, and my sister and I became his caregivers.

After a fall, Dad was taken to the hospital. He had pneumonia in both lungs. Despite a 1 in 100 chance of survival, Dad was discharged to a nonspecialist care home. I was pregnant at this time, and we felt so helpless.

Lauren is photographed running the Brighton Marathon.

Dad became bedbound, with no interest in leaving the room. COVID-19 hit and we were scared to visit. He developed infections and would refuse hospital visits and medical treatment. He was difficult and argumentative. Visits lasted five minutes, then he would ask us to leave.

After another infection, Dad tested positive for COVID-19. We stood at the door with PPE protection to visit. My sister told him I had given birth and he said “Congratulations.” That was the last time I saw him.

The call came a few days later, to say he had died. I almost felt relieved that Dad wasn’t suffering anymore.

I attend two clinics and was given the incredible opportunity to take part in a Phase 2 clinical trial for an experimental therapy. I have lumbar punctures every three months with a placebo/smaller dose/larger dose — I’m not told which.

I attended a local HD support group. It’s nice to meet other people affected.

I feel frustrated by people, including healthcare professionals, who have not heard of HD, or don’t realize how much it affects your life, long before you are symptomatic.

I use my diagnosis as motivation to make a happy life for my girls, who are my reason to continue.

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.