Tamara shares her inspiring story of living with Prader-Willi Syndrome

July 4, 2019

Tamara, a 40 year old lady with Prader-Willi Syndrome (PWS) who lives at Gretton House, one of our specialist PWS residential services in Corby, was recently invited by Charity, Teamwork Trust to take part in their Co-Production Week, a national initiative where people share their lived experiences to help and benefit others.  

Teamwork Trust is a charity that work with and support individuals with mental health needs, learning and physical disabilities and provide a range of enabling and education projects, activities and counselling programmes.  

Tamara who attends Teamwork Trust once a week, was asked to share her story with her peers and staff to create better understanding of her condition and the challenges that people with PWS can face.

Tamara, who was almost 30 stone when she was diagnosed with PWS in her early twenties, told the group how a lack of understanding and mismanagement of her condition led to her extreme weight gain. “I grew up not knowing I had PWS and was bullied when I was at school for stealing from lunchboxes and skin picking, which is another symptom, because children didn’t understand that I couldn’t help it,” said Tamara.

After her diagnosis Tamara arrived at Consensus Gretton service, Gretton House in 2003, aged 24 and fully embraced the lifestyle, made new friends, became part of her local community, exercised and quickly lost weight.

“I now weigh just 10 stone, but I still need 24/7 care to live a healthy life. I do not have access to the kitchen and am supported by an experienced team who know how I feel around food and make sure there are no temptations. I am able to live a more independent life and I am even allowed the occasional treats. I will never go back to how I used to be, and I am thankful for the support that allows me to live healthily.

“People say I am brave standing up and telling my story, but I share sensitive things because I want others to understand.”

Myles Kelly, Prader-Willi Syndrome Liaison Officer at Consensus Gretton, said: “Taking part in Teamwork’s Co-Production Week has been a wonderful experience for Tamara and we are delighted that sharing her story has created better understanding of the condition and the challenges individuals can face.  Her story also highlights how with the right support individuals with PWS can be empowered to make healthy food and lifestyle choices and live meaningful and fulfilling lives.” 

He added: “At Consensus Gretton, our goal is to ensure opportunity, choice and success for all the individuals we support and we use person-centred planning to support them to achieve the goals that are important to them. It’s great that we can work with Charities like Teamwork who provide excellent opportunities for our individuals to make new friends, learn new skills and make a positive difference within the community.”

John Bruce, Teamwork’s strategic director said: “Hearing from someone who has learnt to overcome significant health problems like Tamara is far more meaningful than reading about symptoms from a book. Little things like understanding why someone has to control their eating can make a massive difference. We were delighted that Tamara has been able to tell her story so articulately and with such emotion, because that is what co-production is all about. Sharing real life experiences.”

Fellow Teamwork member, Mark said, “I thought it was really brave of Tamara to tell us about her condition and I really enjoyed it.”

Watch the video about Tamara’s presentation here:

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