Woman’s rare condition left her with tumours all over her body
Katie Eliot, 42, was diagnosed with tuberous sclerosis at 18 years old
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Your support makes all the difference.A woman who doctors thought would not survive past childhood after tumours were found on her heart and later spread across her body has surpassed her prognosis by decades, raising two children and enjoying a successful career in which she became mayor of her town.
Katie Eliot, 42, who now works as a town councillor and runs a karaoke night, said she has experienced “amazing things” in her life, despite bleak medical predictions in her youth, and is now determined to “grab life by the horns”.
Katie, who lives in Bishop Auckland, Durham, with her partner, John, 63, a school bus driver, was diagnosed with tuberous sclerosis at 18 years old, which is a rare genetic condition that causes benign tumours to develop in different parts of the body.
The condition can result in health problems including epilepsy, learning disabilities, skin abnormalities, breathing difficulties and a build-up of fluid in the brain.
After undergoing open-heart surgery at just three weeks old, a tumour was discovered on Katie’s heart – but doctors did not initially think she had tuberous sclerosis as she did not exhibit other symptoms.
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After finally being diagnosed at 18, Katie outlived her prognosis, became mayor of Bishop Auckland in May 2021, met the King and most recently recorded a song at Abbey Road Studios.
Katie, who has two children aged 12 and 10, said: “After ruling out my condition at first, my mum would often say to me when I would complain, ‘just be grateful that you don’t have tuberous sclerosis’.
“It was seen as being a debilitating and life-threatening condition, which it can be, so when I finally received my diagnosis, I was terrified of what my future would look like.
“But I am determined to live my life and do the things I want to do, which has included becoming mayor, going on Mastermind and now, recording a song at Abbey Road Studios.”
I’ve done some amazing things in my life that one might say you wouldn’t expect from somebody with serious health problems.
Katie now knows that she has had tuberous sclerosis since birth, but was not diagnosed until she was 18.
At three weeks old, she had undergone open heart surgery after doctors discovered she had tumours on her heart, but during the procedure, it was deemed too risky to remove the mass.
Afterwards, doctors feared the worst for Katie.
“My parents were warned that I would not survive past childhood and, as they couldn’t operate, that they should take me home and enjoy every moment,” she said.
It was not until she was in sixth form college, that Katie suffered what she thought was a stroke and was rushed to hospital.
Once there a brain scan confirmed the condition she has had since birth.
“I remember being at school and suddenly losing the sensation down one side of my body, but the brain scan revealed more tumours and that’s when I was diagnosed with tuberous sclerosis,” she said.
“The condition is both life-changing and life-limiting, and I knew the ramifications of being diagnosed with it.
“I knew that it would mean for the rest of my life, I would need routine scans my heart, my lungs, my kidneys, my brain to check that I hadn’t developed more tumours.”
I am determined to live my life and do the things I want to do, which has included becoming mayor.
As a result of tuberous sclerosis, Katie also has facial angiofibromas, which causes bumps and redness on her face.
“It can be quite embarrassing when my face flushes bright red, and my skin is not lovely and smooth, it’s quite bumpy,” she said.
“It’s not been an easy road since my diagnosis because I’ve needed a lot of surgery.”
In a bid to remove some of her tumours, Katie has undergone multiple bone graft surgeries between 2007 and 2015, which were unsuccessful, and have left her with a missing collarbone and an unstable ankle.
Now, she is awaiting further surgery to stabilise her leg as she is weaker on her right side.
Despite her health complications, from May 2021 to May 2022, Katie served as mayor of her local town, Bishop Auckland.
During her time as mayor, she met the King and the Queen of Spain at the opening of a local Spanish gallery.
“It was a major moment for me, after being told from a young age that not much was expected for me, to see how far I’ve come feels really good,” she said.
“I’ve done some amazing things in my life that one might say you wouldn’t expect from somebody with serious health problems.”
It’s not been an easy road since my diagnosis because I’ve needed a lot of surgery.
She added: “I decided that I wasn’t going to live with tuberous sclerosis, I was just going to live, and grab life by the horns.”
Katie is taking part in pharmaceutical company Sanofi’s This is Rare campaign, which aims to put the voices of the rare disease community centre stage in the call for greater recognition, awareness and advocacy for the one in 17 people affected by a rare disease in the UK.
Taking inspiration from the empowerment song This Is Me, originally sung by Keala Settle, patients, patient organisation representatives and health professionals came together at Abbey Road Studios to share their experiences through music and song and record This Is Rare – under the guidance of famous vocal coaches Carrie and David Grant.
Taking part in the studio session, Katie says the opportunity to raise awareness through music was unmissable.
“I’m still slightly overwhelmed by the fact that we were there, Abbey Road Studios has such an incredible vibe to it,” she said.
“There’s so much history and it felt like such a creative space.
After being told from a young age that not much was expected for me, to see how far I’ve come feels really good.
“Carrie and David Grant were so nice and such lovely genuine human beings.
“I feel very proud to have been part of the project to raise awareness and I want to show people that serious health problems doesn’t mean your life is over, you can still live a very full and exciting life.”
Ben Whitehouse, head of rare diseases at Sanofi UK and Ireland, said: “At Sanofi, we’re committed to creating fulfilling futures for extraordinary people. No matter how rare their condition.
I decided that I wasn’t going to live with tuberous sclerosis, I was just going to live, and grab life by the horns.
“By focusing on these uncommon and underserved medical conditions, we want to empower the lives of patients with rare diseases by developing and introducing new treatments, as well as providing support that extends beyond our medicines, to deliver our vision for Better Care for Rare.”
Katie was a member of the This Is Rare community choir, an initiative supported and funded by Sanofi UK&IE to unify the voices of the rare disease community through music. You can watch the performance at youtu.be/j2-E_NDj2dQ.