I watched my grandmother die slowly with an incurable brain disease – then I learnt my mother and I have it too

A woman who watched her grandmother deteriorate due to a rare, incurable brain disease later learnt she and her mother face the same fate after being diagnosed with the same illness. 

Charlotte Conn, from Teesside, North East England, already knows what the future is likely to hold for her as she has watched her great-grandmother, her own grandmother, and now her mother battle Huntington’s disease. 

The inherited condition stops parts of the brain from working properly over time, with symptoms often developing between the ages of 30-50, and is usually fatal after a period of up to 20 years.

After her grandmother Lin was diagnosed in 2002, her mother Elaine waited two years before also getting tested – which was positive.

After Lin passed away in 2021, Charlotte finally bit the bullet and got herself tested in early 2023.

Charlotte Conn, from Teesside, North East England, who lost her grandmother to a rare brain disease, which her mother also has, has been diagnosed with the same condition

While helping care for her mother, she was given the devastating news that she also has Huntington’s.

Charlotte, who is an Organisational Development and Human Resources Professional for the NHS, said: ‘I’m not a pessimistic person but part of me knew I would be gene positive – I’d had a feeling most of my adult life.

‘I felt quite numb but I didn’t feel the emotions I’d imagined myself feeling in the decade leading up to my test. I shared with my dad and a handful of friends I was getting the test.

‘I didn’t want the expectation from people to know the outcome, I just wanted the chance to process things in my own way.’

She went to the appointment with her fiancé, Mitch, who burst into tears upon hearing the news.

Charlotte said: ‘It hit home just how affected my loved ones would be by the news I would definitely develop Huntington’s disease.

‘I suppose to find out someone you care for is going to suffer unimaginably in their life is a difficult pill to swallow.

‘When people ask me about that day, I always say naturally you care more about others than you do yourself, so I was more concerned about the people around me.’

Her grandmother Lin (pictured) was diagnosed with Huntington’s disease in 2002, and she passed away in 2021

Charlotte’s mother Elaine (left) waited two years after her own mother passed before also getting tested – and she was also positive

Lin had opted to get tested after the loss of her own mother – Charlotte’s great-grandmother – who is believed to have misdiagnosed with dementia and Parkinson’s, with a post-mortem identifying Huntington’s disease

Charlotte said finding out if she had the disease sent Lin ‘in a devastating spiral of poor mental health’

Charlotte hadn’t told her mother she was getting the test beforehand to save her the stress, but after returning from a charity Kilimanjaro climb in February 2023 and discovering the heartbreaking news, she knew it was time to tell her.

She said: ‘When I arrived to my mum’s house, my dad had let her know about 10 minutes before that we were coming to tell them the outcome of genetic testing.

‘As soon as she opened the door, she knew. I’ll never, ever forget the scream she let out when I said ‘Mum I’m so sorry, it’s bad news’.

‘She apologised profusely, blaming herself for my fate but she didn’t know anything of the disease in the family when I was conceived.

‘My dad cried too. He’s such a positive person that he’d never let his mind wander to a world where me or my sister had Huntington’s disease. In that moment, I felt his world around him crumble.’

Her sister, Hannah, is 23 and hasn’t yet taken the test, but was devastated to learn of Charlotte’s result.

Charlotte said that, despite testing positive, she doesn’t regret finding out her fate

Charlotte had been debating whether or not to find out her ‘gene status’ – which would reveal whether she is positive and will develop the disease, or negative and will not – for the better part of a decade

Elaine (left) was diagnosed with Huntington’s disease two days before Charlotte’s seventh birthday 

Charlotte was first told it could be hereditary four years later, when she was 11

Charlotte said: ‘We watched my nan suffer so inhumanely and we are living the same nightmare again with mum, the thought of me being in the same position too broke her.’

The young woman said that, despite testing positive, she doesn’t regret finding out her fate.

She said: ‘People often ask if I regret it but, in my opinion, knowledge is power and knowing my status allows me to take part in research, clinical trials and plan for my future.’

It wasn’t a decision Charlotte took lightly, and she had been debating whether or not to find out her ‘gene status’ – which would reveal whether she is positive and will develop the disease, or negative and will not – for the better part of a decade.

She said: ‘When I was 18, I thought I wanted to know and I asked for a referral from my GP to the genetics team.

‘During my first appointment, the counsellor helped me realise I wasn’t ready at 18 to find out – I was about to go to a local university to ensure I could still care for my Nan and mum and I was still figuring out who I was and what I wanted from my life.

‘I continued to see the counsellor once a year for seven years, going back and forth with the decision on whether to test.

Now, Charlotte is passionate about raising awareness for the cruel disease that has so harshly affected her family

As well as working with charities, she also helps care for her mother – which can involve anything from cooking and cleaning to attending appointments, financial management, administering medication and activities

Charlotte and her father Paul (left) have raised over £20,000 for Huntington’s disease charities over the years with various challenges

She went to the doctor appointment with her fiancé, Mitch, (left) who burst into tears upon hearing the news that she had the condition 

‘I eventually decided to wait until my nan had passed, so I could emotionally give her my all.

‘Testing is a very personal decision and only a small number of people impacted by Huntington’s decide to have predictive genetic testing.’

Lin had opted to get tested after the loss of her own mother – Charlotte’s great-grandmother – who is believed to have misdiagnosed with dementia and Parkinson’s, with a post-mortem identifying Huntington’s disease.

Charlotte said finding out sent Lin ‘in a devastating spiral of poor mental health’.

She said: ‘She couldn’t cope with the fact she’d put my mum at risk unknowingly and her two granddaughters. We were her whole existence and her whole life revolved around us as her family.

‘My mum waited a few years and found out she was positive in 2004, two days before my seventh birthday.

Elaine’s condition has declined quite rapidly over the last year, her swallowing has become difficult and she is booked in for surgery later in the year to have a PEG feeding tube into her stomach

Speaking about her mother Charlotte said: ‘She’s my life and I would genuinely do anything for her’

Charlotte said: ‘Our journey is not an easy one but we are so grateful for the bond we share as a family, the love we have for one another and the time we have now’

‘It was another bombshell for the family, and our lives as we knew them were changed forever.’

Charlotte was first told it could be hereditary four years later, when she was 11.

She said: ‘I had watched my nan become more unwell with every year pass. I understood she was poorly but not the extent to how serious her condition was.

‘I vividly recall sharing the news I’d learned with one friend, on a field when we were playing out one night.

‘I said ‘the disease that makes my nan so different, my mum will be like that one day and me and Hannah might be too’.

‘I remember me not really understanding the magnitude of it all but I gave my all to being as caring as possible for them both.

‘I didn’t tell any of my friends until I was around 14, even then I told very few people because I didn’t know how to verbalise it.’

Now, Charlotte is passionate about raising awareness for the cruel disease that has so harshly affected her family.

As well as working with charities, she also helps care for her mother – which can involve anything from cooking and cleaning to attending appointments, financial management, administering medication and activities.

Charlotte said: ‘She’s my life and I would genuinely do anything for her.

‘Her condition has declined quite rapidly over the last year, her swallowing has become very difficult and she is booked in for surgery later in the year to have a PEG feeding tube into her stomach.

‘I can’t even imagine how hard it is for her, to have once been a healthy, happy individual with a family and a thriving career to find out your mum is terminally ill and you are too.

‘She says the hardest aspect of her journey was finding out about my result.

‘Our journey is not an easy one but we are so grateful for the bond we share as a family, the love we have for one another and the time we have now.

‘I’m heavily involved in the Huntington’s community and have met families from all over the world online, through sharing my story on social media.

‘Me and my dad have raised over £20,000 for Huntington’s disease charities between us over the years with various challenges. I find a lot of comfort in helping others.

‘I’ll keep sharing my story until Huntington’s is a disease of the past, an effective treatment or cure is found, and people don’t suffer like they do now.

‘Receiving my results has made me see the beauty in the tiny moments in life, and opened my eyes to the fragility of everybody’s time on earth. Tomorrow is never promised.

‘I think life should be measured in the quality of the years you have, rather than the quantity, and that’s what I channel my energy into.’