My twin received a life-changing diagnosis and I felt sudden guilt
My twin received a life-changing diagnosis and I felt sudden guilt
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‘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 had 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.
![[Jayne Harrison: My twin sister was diagnosed with an inherited life-changing condition - but I wasn't]](https://metro.co.uk/wp-content/uploads/2025/01/SEI_236790639-273d-e1737455746835.jpg?quality=90&strip=all&w=443)
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.
![[Jayne Harrison: My twin sister was diagnosed with an inherited life-changing condition - but I wasn't]](https://metro.co.uk/wp-content/uploads/2025/01/SEI_236790638-fc4f-e1737455859565.jpg?quality=90&strip=all&w=529)
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. She sought help and the GP treated her for the migraines, but they only grew worse after she gave birth to her daughter in February 2013, and she started to have numbness and pins and needles on one side of her body.
![[Jayne Harrison: My twin sister was diagnosed with an inherited life-changing condition - but I wasn't]](https://metro.co.uk/wp-content/uploads/2025/01/SEI_236790358-1735-e1737456063127.jpg?quality=90&strip=all&w=480)
By the time she was in her late 30s, things had become much worse. Amanda developed extreme fatigue, forgetfulness, memory problems and intrusive thoughts. 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.
![[Jayne Harrison hugging her sister, Amanda, with a Christmas tree behind them (Picture: Jayne Harrison)]](https://metro.co.uk/wp-content/uploads/2025/01/SEI_236790637-ba44-e1737455627167.jpg?quality=90&strip=all&w=480)
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 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.
![[Jayne Harrison: My twin sister was diagnosed with an inherited life-changing condition - but I wasn't]](https://metro.co.uk/wp-content/uploads/2025/01/SEI_236790643-b01e-e1737456976539.jpg?quality=90&strip=all&w=299)
