1st July 2019: Excessive overeating, frustration and anxiety – just some of the daily struggles for Tamara, whose recent presentation at Teamwork Trust highlighted the challenges of life with a rare genetic condition.

40-year-old Tamara has Prader-Willi Syndrome (PWS) – a condition which occurs in one in every 15,000 births and is characterised by a persistent hunger, excessive appetite and lack of satiety cues, as well as a number of physical symptoms, learning difficulties and behavioural challenges.

Tamara is a resident at Gretton House in Corby, a specialist residential service for individuals with PWS run by Consensus Gretton, and also attends Teamwork Trust once a week. It was at Teamwork where she was asked to speak to her peers and staff about how she copes day-to-day – all part of the charity’s Co-Production Week, a national initiative where people share their lived experiences to help and benefit others. 

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.

After her diagnosis Tamara arrived at a Consensus Gretton service 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.”

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. We have other service-users at Teamwork with PWS, so it’s important for our members and staff to learn more about the daily challenges and how they can help. 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.”

Some comments from Teamwork members:

I thought it was really brave of Tamara to tell us about her condition and I really enjoyed it.

I enjoyed her talking about her condition about weight loss.

I learnt that Tamara needs lots of help.

The pictures helped me 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.”