FIGHTING for my sister

While her twin sister suffers from a rare disease, Jayne Harrison battles with survivor's guilt

-  JAYNE HARRISON METRO

Why me and not you?’ my twin sister, Amanda, asked me. It was a mild, sunny day in April 2022 and we were at my mum’s house, a place we often gather as a family.

Two weeks previously, I’d been told that I did not have the rare, mostly genetic disease known as CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy), and I had finally built up the courage to give my sister this news.

Mum’s had felt like a safe place to process something so life-altering – but my sister’s reaction was heart-wrenching and I had no answer to her question. Survivor’s guilt has lingered ever since, especially as her condition continues to worsen.

Amanda’s symptoms started with migraines. They had been an issue for years – as far back as her teens – but worsened when she was in her early 30s.

The GP treated the migraines, but they only grew worse after she gave birth to her daughter in 2013, and she started to have numbness and pins and needles on one side of her body. By her late 30s, things had become much worse. She developed extreme fatigue, memory problems, forgetfulness and intrusive thoughts.

Devastating news

I vividly remember the day she collapsed. It was July 2021. I was at home and received a call from my mum to say Amanda was on the floor, unable to stand. I rushed over and saw how bad things were. Amanda’s speech was slurred and she became aggressive, which was unlike her.

Mum called an ambulance. The emergency services assumed that Amanda had been drinking or taken something, but that couldn’t have been further from the truth. They tried to get her to walk to the ambulance, but she collapsed repeatedly.

She was admitted to the stroke ward, where doctors performed tests – and discovered lesions on her brain.