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Press release

  • 9 July 2007

Student fronts campaign for more organ donors

Robyn Tainty

Robyn Tainty

University of Sussex student Robyn Tainty is taking time out from her studies to publicise a national campaign to encourage more people to become organ and tissue donors.

Robyn, 23, took a break from her research work to make a speech in the House of Commons and take a turn as guest on the GMTV breakfast news sofa, in the run-up to National Transplant Week (July 7-14). Robyn is the "face" of this year's campaign - and is in desperate need of a double lung transplant to save her life.

Robyn, who is busy completing a part-time MA in Gender Studies, has cystic fibrosis, a genetic condition requiring daily treatment to keep the lungs from becoming congested. Repeated infections related to her condition mean that Robyn's lungs are damaged beyond recovery. She now relies on oxygen cylinders to assist her failing lungs and has to use a wheelchair.

A chronic shortage of organ donors means that Robyn has an agonising wait for a transplant, as her condition deteriorates. She is one of 8,000 waiting for a transplant - and 450 of those die each year, waiting.

Robyn explains: "I am now on 24-hour oxygen which has had a big impact on my life, particularly as it has hampered my much-valued independence. I try to maintain as normal a life as possible, but this is getting harder as my tiredness and breathlessness get worse. Essentially, my world is getting smaller."

To highlight the need for more organ donors, Robyn decided to tell her story. She is doing so with the help of friends and fellow cystic fibrosis patients, Emma Harris and Emily Thackery, who run the Live Life Then Give Life campaign. Their campaign works in partnership with Transplants In Mind (TIM), organisers of National Transplant Week. Robyn says: "Emma and Emily are friends of mine through the Cystic Fibrosis Trust internet chat forums. I offered help and the next thing I knew I was speaking at the House of Commons!"

As the face of National Transplant Week, Robyn has been telling her story and addressing MPs and journalists about the plight of patients in need of transplants.

As she waits for news of her own situation, Robyn is determined to get on with her life. With support from the University and her tutors, she is writing up her MA thesis, on women and binge drinking, and is now planning to begin a doctorate, researching cystic fibrosis patients and their carers. She says: "When I am ill or in hospital I still manage to do my work OK, I just do it in bed!

"There is so much more I want to do with my life, but I am only too aware of the huge shortage of donors. However, I am trying my very hardest to stay positive and enjoy what is left of my life to the best of my ability, however limited it may be."

Robyn is asking everyone to consider signing the NHS Organ Donor Register this week.

Notes for editors

University of Sussex Press office contacts: Maggie Clune or Jacqui Bealing, tel: 01273 678 888 or email

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