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Rare Disease Day – and happy 20th Lauren.

It’s 29 February – happy 20th Lauren, you’re truly one in a million!

On Rare Disease day AGSD-UK celebrates everyone living with a rare condition. Today we have chosen to highlight someone special, not only does Lauren have a rare disease but her birthday is on 29 February.

1 in 100,000 of us are born with a defect on the AGL gene resulting in Glycogen Storage Disease Type 3. Lauren is one of the 1 in 100,000, and with her birthday on 29 February she must be 1 in a million.  

GSD3, a hidden disability

GSD3 is a difficult disease to manage, especially through childhood. Diet is extremely restricted, fatigue is constant, energy is low. It is a hidden disability, hard for other people to see when you are struggling, having to explain that you are tired, not a “lazy teenager”, the reality is there are often no outward signs to this painful, exhausting and isolating condition. 

A double-edged sword

As Lauren explains these hidden disabilities carry a double-edged sword.

“You can tell people your diagnosis so they can be given the opportunity to be accommodating and caring, but they might discriminate negatively too. This is why some people feel forced into staying silent, but this worsens feelings of isolation, loneliness and lack of understanding”.

Lauren faced up to these difficulties at a young age when she had problems at school, particularly with regard to physical education and the ever present tiredness she experienced. She took a pro-active approach working with the school through good communication and awareness raising. 

Now she is a trailblazer

Lauren has become a trailblazer, she is an active member of the AGSD-UK and helps as a volunteer on GSD3’s Cori-Action Team Support (CATS). Lauren spoke about teenagers and mental health at the last AGSD-UK conference.

Lauren said:

“The chances of being born on a leap day is 1 in 1,461 and my leap age will be 5 this year, but I will party like I’m twenty!”

Photo: Despite it being her 5th birthday, Lauren is going to party like a 20 year old.