Niamh Antrobus
Senior Communications Officer , Beacon for Rare Diseases on behalf of Andy Ryan
Andy Ryan of The Great British Bake Off shares his experience of living with Klippel-Trenaunay-Weber Syndrome (KTWS), a rare condition affecting around 1 in 100,000 people in the UK.1
Andy reached out to Beacon for Rare Diseases to share his journey, which highlights just how vital community is. KTWS currently has no UK-based support group, which is sadly the case for 50% of the 7,000+ rare conditions. Without the support of a designated KTWS group, Andy has been left isolated, misunderstood and without a trusted source to turn to
— a reality many in the rare community face.
Impact of Klippel-Trenaunay-Weber Syndrome
Andy states: “I was born with this condition. Every day can feel like a battle. Often, I’ll be in situations where others don’t understand the severity. I can’t simply push through the pain.” The emotional impact of living with KTWS has been just as challenging as the physical aspect. Rare disease charity Rareminds found that 85% of people who have or care for someone with a rare condition experience a negative impact on their mental health.
“In my teenage years, I was bullied because of my appearance, and as much as I tried to ignore it, those experiences affected my self-esteem,” Andy adds. “I still often wear jeans at the beach to cover my leg because I feel ashamed of the way it looks. It can be sad when I think about how much I’ve hidden because I feared being judged. I now want to change that, not just for myself, but for others who may feel the same way.”
I was born with this condition.
Every day can feel like a battle.
Rare community support and awareness
Andy is using his newfound platform to raise awareness. “I want my story to resonate, showing that having a disability doesn’t mean you can’t pursue your dreams,” he says. I’ve seen how powerful a community can be. I’d like to demonstrate that with resilience and support, it is possible to lead a fulfilling life despite chronic conditions.”
Beacon is working to ensure no one walks their rare journey alone by connecting advocates like Andy through community-building events, mentoring, research and sharing lived experiences. By sharing and combining the rare community’s skills, we are creating an unstoppable movement that brings real change to those living with a rare disease.
[1] TBC
[2] Rare Disease UK. 2016. The Rare Reality – an insight into the patient and family experience of rare disease.
