A trip to the USA to learn more

Sarah Burgess at the specialist conference in the USA
Sarah Burgess at the specialist conference in the USA

A Luton woman, who has a rare genetic condition, has attended a conference in the USA, thanks to fundraising efforts of her friends.

Sarah Burgess, 34, was diagnosed with Mucolipidosis Type 3 when she was eight years old.

The specialist conference in the USA

The specialist conference in the USA

It is a storage disease which means her body is missing enzymes that break down and dispose of cells, causing the ends of her bones to crumble.

She wanted to attend the specialist conference so she could talk to experts and learn more about her condition.

Her friends organised a music event at The Bear Club to raise money for her trip.

Sarah said: “I am so grateful to everyone that donated, I am so glad that I had the opportunity to go to the conference.

“I learnt a lot about my condition, in terms of deterioration and how I might be affected in the future.

“I always knew my condition was complicated, but learning more about the genetic side, it is so complicated and difficult and unfortunately in my lifetime I don’t think there will be a cure.

“I also met so many lovely people, other sufferers, their families and Drs.”

She has wrote a blog about her experience at the conference and what she learnt, to read about it, visit: https://sarahsmlstory.wordpress.com/