Publication date: Aug 11, 2019
On a lazy Sunday morning in May last year, Isobel Lloyd was at her boyfriend’s house, having coffee with his mum.
The conversation had worked around to Lloyd’s grandma – her mother’s mother – who’d died in her 50s, when Lloyd was very young.
Lloyd had forgotten the name of her grandma’s disease, hadn’t thought about it in years.
She didn’t tell her boyfriend’s mother what she’d just learned, -But I felt the colour rush out of my face,” says Lloyd, an only child.
Secrecy, evasion and lies are frequent features for families grappling with genetic disease.
Whether it’s HD, a breast cancer gene, inheritable bowel cancer, early-onset Alzheimer’s, it’s not uncommon for younger generations to stumble upon their inheritance by noticing patterns, asking questions.
In If You Were Here, 26-year-old Flo is newly engaged and about to emigrate when her grandma tells her that she might carry the HD gene.
The book weaves three voices – Flo’s, her grandma’s and diaries of Flo’s mother, who had died years earlier.
Peterson came to the subject after meeting a friend of her mother’s who had tested positive for the HD gene.
In the first of its kind, an anonymous claimant is suing St George’s NHS Trust for failing to inform her of her HD risk.
Her father, a St George’s patient, had HD and refused to let doctors tell his family – his daughter was pregnant and he feared she’d have a termination.
She went on to have the child and has since tested positive for HD – so her daughter has a 50% chance of inheriting it, too.
-Our role is to help families adjust and come to terms with genetic conditions together, not divide them up,” she says.
Genetic counsellors generally see patients when they’ve learned about a family disease, or are considering being tested for the gene.
Having a genetic condition is difficult and if you haven’t told your family, they can’t support you and you can’t support them. “
With HD, recent drug breakthroughs have given much hope to gene carriers who are still symptomless; and having a baby through pre-implantation genetic diagnosis, a type of IVF, can ensure your own children don’t inherit it.
-I drove to his house and asked if Mum had the HD gene,” says Lloyd.
So many guests present on that day knew she carried a 50% risk of having HD – but my cousin had no idea. “
Her discovery forced the disease into the open, her cousins were told and they contacted the Huntington’s Disease Association, visited their local advisor and attended HD events.
They also began seeing a genetic counsellor and Lloyd’s newly married cousin was tested for the gene because she wants to start a family.