Kingston man, 61, diagnosed with rare 'reverse Benjamin Button' disease

Tony Bryant, a 61-year-old former firefighter living in Kingston, has been diagnosed with Short Telomere Syndrome, a rare genetic condition that causes his body to age prematurely. The disease means his cells shorten faster than normal, leading to a reduced ability to repair themselves and damage to vital organs.

Impact on Health

The syndrome has significantly affected Tony's lungs and liver. He now requires a 24-hour oxygen tank due to advanced pulmonary fibrosis and progressive liver disease. Sophia Bryant, his daughter, told MyLondon that doctors described the condition as the 'opposite version of Benjamin Button' because her father is ageing before his time.

Prior to his diagnosis in 2023, Tony maintained an active lifestyle, including running and coaching rugby. He also served as a firefighter for 30 years. His current health requires him to use oxygen even for basic activities like standing or sitting, leading him to express feelings of being a burden.

Hereditary Nature and Support Efforts

Short Telomere Syndrome is hereditary, and Sophia confirmed that two of Tony's children have been diagnosed with the genetic mutation. The severity of symptoms can vary, with some individuals experiencing no effects while others develop the full range of complications.

Sophia has initiated a GoFundMe campaign to raise awareness and gather funds for Tony's ongoing care. The money raised will help cover essential needs such as mobility aids and alleviate financial stress, allowing the family to spend more time together. They also hope to explore potential treatments, including a medication called Nerandomilast that has been researched in America, and enrol Tony in a trial if possible.

She noted the rarity of the condition, observing that there is no dedicated NHS page for Short Telomere Syndrome and no charities that directly support those affected. Sophia has taken it upon herself to spread information about the disease.