Influencer Michiel Vandeweert with rare rapid aging disorder dies at age 28
An influencer who had a rare genetic disorder which causes the body to rapidly age has passed away at the age of 28.
Michiel Vandeweert, from Belgium, had thousands of fans who followed his journey on Twitch as well as YouTube and Instagram.
Influencer often used his platform to raise awareness about his condition Hutchinson-Gilford Progeria Syndrome, which is also known as Progeria. The rare and fatal condition causes children to age very rapidly due to a gene mutation producing an abnormal protein called progerin.
This results in hair loss, tightened skin and serious heart disease, with the average life expectancy being from around 13 to 20 years.
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Vandeweert appeared in a documentary titled How To Be Alive: Amber and Michiel alongside his younger sister, which was released earlier this year.
Vandeweert also gave a TEDxTalk about the condition, which was titled Life’s short, make the most of it back in 2018, revealing the moment he learned what having progeria meant.
He explained to the audience: “Despite me and my sister’s disease, I look on the bright side of life and try to live each day to its fullest," he told the audience.
“So don’t complain about the things you’re not capable of, but show the world what you are capable of.”
The content creator credited his friends and family for helping him enjoy life to the fullest, along with his hobbies including snowboarding and go-karting as well as gaming.
As the news of Vandeweert's death was confirmed, his family shared a statement with Dutch-language outlet VRT News, which read: “Michiel leaves a deep impression and an indelible memory with everyone who knew him or followed his story.
“We wish the parents, sister, family, and friends much strength during these difficult times.”
What is progeria?
According to The Progeria Research Foundation, progeria is caused by a genetic mutation to the LMNA gene, which is responsible for keeping cells healthy.
Without the protein produced by the gene, a person’s cells become unstable, leading to rapid aging.
Progeria is extremely rare, with statistics suggesting that one in every four to eight million children are diagnosed with the disease. Roughly 400 people are known to be living with the condition.
Children born with progeria will develop symptoms within the first year of life; this includes:
- Slower growth (most people with progeria reach an average height of
- Hair loss
- Wrinkled skin
- Loss of body fat
- A large head size compared to the rest of the body