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Preston Paralympian reveals how he lives with a rare medical condition

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TEENAGER Jack Bridge was diagnosed with haemophilia, a rare bleeding disorder when he was a baby. The Preston Paralympian tells AASMA DAY how he has never let the condition stand in his way and why he believes swimming has prevented him suffering major bleeds for years. He is now sharing his experiences in a book to help families new to the condition.

AS far back as he can remember, Jack Bridge has suffered from haemophilia, a bleeding disorder where the blood lacks sufficient clotting factor.

One of Jack’s earliest memories is biting his tongue at the age of three while on a see-saw and losing so much blood that he ended up in hospital for three days.

Jack, 19, who lives in Penwortham, near Preston, says: “I found out much later I’d been at death’s door.

“Someone upstairs must have been looking after me as I really shouldn’t be here.”

Jack was first diagnosed with haemophilia when he was nine-months-old and his parents Paul and Adele were shocked and concerned.

Mum Adele recalls: “Neither of us knew anything about haemophilia, except that Queen Victoria had passed it on to one of her sons.

“We worried about what Jack would be capable of and how normal a life he could expect.

“We were determined to let him live a full life though as our philosophy is that you’re only on this earth once so you have to make the most of what you’ve been given.

“Jack had his first bleed at 18 months. It was awful. He was in a lot of pain and we were very scared.

“We had to rush to hospital to get him treatment.

“Those trips to Manchester were quite frequent in the early days and the bruises were heartbreaking.

“Jack was such a beautiful child and it really wasn’t fair.

“However, Jack smiled throughout.

“I think that’s how we got through those dark days.”

People with haemophilia usually receive treatment known as factor replacement therapy to help their blood clot. However, in some people, the immune system will start to believe the treatment is harmful.

The immune system will then start to produce antibodies to block the effects of the treatment. These antibodies are known as ‘inhibitors’.

After the see-saw incident, Jack’s parents and doctors decided to tackle the inhibitors by putting Jack on a desensitisation programme.

Within six weeks, it had worked. Jack had no more inhibitors and has been stable ever since.

He says: “I was very lucky. I’ve met some young people with haemophilia who’ve had inhibitors for years.”

At the age of five, Jack began prophylaxis which is regular treatment to prevent bleeds.

His dad Paul learned to inject and he did it for around six years until, before a school trip Jack learned to self-administer.

Jack, a former Hutton Grammar School pupil who is now at Northumbria University in Newcastle studying business leadership and management, remembers:
“Everyone around me at school was brilliant and really understanding.

“When I was at high school we went in to see the head of year to have a chat about my haemophilia.

“We decided it was best to leave decisions to me. You get to be very mature with your haemophilia, so I always knew my own limits and boundaries.”

Jack began swimming at the age of four and now trains with Preston Swimming Club.

He worked through the ranks and initially competed with able-bodied swimmers.

However, as he is not able to straighten his left arm or left leg because of the bleeds he had as a child, he was classified as a disabled swimmer in 2009.

He now trains around 20 hours every week including swimming and gym work and has been competing in swimming for eight years and holds eight British records.

Jack competed in London 2012 as part of the Paralympics GB swimming team.

Jack says: “Competing at London 2012 has been the greatest experience of my life so far.

“As well as taking part in the final and coming fourth, it was amazing to be in the athletes’ village, surrounded by all those inspirational people.

“My next swimming target is the 2016 Paralympics in Rio.

“I have only had one major bleed in the last five years.

“I believe that if I keep my muscles and joints working, the muscles are strong enough to resist the bleeds.

“There’s no scientific proof but my coach believes it too and it seems to work for me.

Jack has now shared his experiences of living with haemophilia for a unique book called Buddies to help families new to the condition.

The Buddies book has been produced with the support of pharmaceutical company Novo Nordisk which makes haemophilia medicines.

Novo Nordisk sponsor the Buddy Award Swimming Academy and funded the Buddies Book,

The book, which features nine different accounts of life with a bleeding disorder, will be distributed to specialist NHS haemophilia centres across the country and is available free on request to anyone affected by such a condition, including family and friends of sufferers.

Jack says: “I haven’t let my haemophilia hold me back. In fact, as a result of my condition, I have been to places that I never dreamed of.

“I wanted to share my positive experiences with other people to show that haemophilia needn’t stop you from leading a normal life.”

“My advice to anyone is that if you want something, you have to work hard; no one is going to get it for you.

“Don’t let haemophilia stop you from having a normal life.”

• Around 23,700 people in the UK have a bleeding disorder and 6,000 have haemophilia.

• Haemophilia is a genetic condition that can cause bleeding into joints and muscles resulting in very painful symptoms that over time can damage joints.

• Haemophilia is classed as a rare disease, which is defined by the European Union as one that affects less than five in 10,000 of the general population. There are around three million people in the UK affected by rare diseases.

 

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