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Rare Disease Day: Romford train driver shares his story of living with a rare disease

PUBLISHED: 14:59 28 February 2018 | UPDATED: 14:59 28 February 2018

Drew Tyne, a train driver for MTR Crossrail wants to raise awareness about what it's like living with a rare disease. Photo: Claire Shepley.

Drew Tyne, a train driver for MTR Crossrail wants to raise awareness about what it's like living with a rare disease. Photo: Claire Shepley.

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A Romford resident with a rare immune deficiency disease wants to raise awareness on Rare Disease Day.

Drew Tyne was diagnosed with common variable immune deficiency at the age of nine. Photo: Claire Shepley. Drew Tyne was diagnosed with common variable immune deficiency at the age of nine. Photo: Claire Shepley.

Drew Tyne, 31, from Drummond Road in Romford shared his story with the Recorder for Rare Disease Day today (Wednesday, February 28).

At the age of nine, Drew was diagnosed with common variable immune deficiency (CVID), which affects one in 50,000 people.

Drew told the Recorder: “My body doesn’t make enough white blood cells to keep me healthy. Each week I have to do an infusion of white blood cells at home, for the rest of my life to keep me healthy.

“I have been lucky enough that I was diagnosed quite early, aged nine. As I have grown up with the condition I have taken more control of it.

“The treatment takes an hour and a half, we just watch a movie together and by the end of the movie it’s done.”

Before his diagnosis, Drew got pneumonia and had to be put in a medical coma for the doctors to be able to find out what was making him ill.

“When I woke up, they diagnosed me and told me what was wrong. At the age of nine you go just go along with it,” Drew said.

“It wasn’t until I was about 13 or 14 that it really sunk in, and I made a decision to not let it dictate my life.”

According to Genetic Alliance UK, the average rare disease patient consults with five doctors, receives three misdiagnoses, and waits four years before receiving their final diagnosis.

For Drew, making good use of a support team is key.

He said: “The hospital team that you’re with do phenomenal work.

“I know they have got lots of pressure on them, and it’s really important to help them help you.

“Having good care support is the best. My wife fully knows and understands my conditions and she’s been a pillar of support.”

The Crossrail train driver also hopes to raise awareness for those who know little about rare diseases.

“A lot of people can really struggle, especially if they have been diagnosed late.

“Raising awareness is also to let people know that there are some illnesses out there that are invisible, but we can’t let the ball drop.”

Drew works with a charity called Primary Immunodeficiency UK (PID UK) who help people not feel isolated.

“For me, that is the key, the isolation can be horrific,” he said.

“With PID UK, we’re able to get so much more information out there.

“It’s about making sure the person who is diagnosed, stays fit and happy, and for them to know that they are not alone.”

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