Group support can help those living with Bardet-Biedl Syndrome to lose weight

Helen’s story backs up a recent service evaluation which found that Slimming World’s programme is effective in helping people with BBS to successfully manage their weight.

A recent service evaluation, undertaken by the UK and Ireland’s leading weight management organisation, Slimming World, shows those with BBS who joined a Slimming World group through a referral programme and attended nine or more of the sessions, on average, lost 4% of their body weight over 12 weeks and reduced their BMI by 1.6kg/m².

Bardet-Biedl Syndrome UK (BBS UK) is the only registered charity supporting people with Bardet-Biedl Syndrome, a rare, recessively inherited genetic condition affecting the cilia which affects approximately one in 100,000 babies born. BBS UK offers its members 12-weeks free membership to Slimming World to help those who wish to access support in losing weight.

BBS can affect many areas of the body, and patients with BBS often struggle with their weight because of insatiable appetite. Helen, 50, who lives with BBS which has affected her eyesight, says: “In August 2021 I joined Slimming World weighing 19st 2.5lbs.

“I spotted a post on the BBS UK Facebook page for free membership to Slimming World for 12 weeks. I’ve tried several methods to lose weight in the past, and they’ve never really worked.

“My mum encouraged me to give Slimming World a go and so I walked into my first group at the end of the summer, and I’ve not looked back! My Consultant Maddie was lovely and the other members really welcoming. My mum came along to support me, and we both really enjoyed the session.

“Before I joined Slimming World I would often skip breakfast or have a quick bowl of sugary cereal, now though I start the day with a cooked breakfast of bacon and eggs. The fat is cut off my bacon and I use a low-fat cooking spray now. My mum helps prepare meals and she’s enjoyed learning new recipes alongside me, and we are definitely eating a lot more fruit and veg now.

“Since losing weight – as well as needing a new wardrobe because my clothes no longer fit – I’ve found moving is a lot easier. Previously, when I’ve gone for a walk my mum has had to guide me, but now I’m the one with the quicker pace, walking ahead of her.

“I’m part of a singing group and love being on the stage performing – now I’ve lost weight I’m so much more confident and happy in myself. Because of BBS, I didn’t think I could lose weight, but joining Slimming World has been the best thing I could have done to improve my health!”

Registered dietitian Jennifer Kent, from Slimming World’s Nutrition, Research and Health Team, says: “Helen’s weight loss success backs up our findings which show that people with BBS, who were referred to Slimming World, successfully lost weight during their 12-week referral, with more than a quarter losing a clinically significant amount of weight during this time.

“Slimming World’s healthy eating plan is flexible, takes into account individual needs and preferences and encourages members to fill up on those foods that are naturally lower in energy density (calories per gram) and also highly satisfying, while limiting foods that are highest in fat and sugar and are less filling. This means they can lose weight without feeling hungry and reduce their calorie intake without needing to count them."

Tonia Hymers​, Operations Manager from BBS UK, says: "We are delighted at the success of our Slimming World group. Obesity is a significant aspect of Bardet-Biedl syndrome (BBS) and has an enormous impact on quality of life. The Slimming World program works well for people with BBS, and encourages healthy eating and smart choices, without significantly restricting portion sizes.

"Helen’s progress has been remarkable. She has been an inspiration and motivated many people in the BBS community to make positive changes themselves. Slimming World has been a great partner to work with and we hope to continue working with them going forwards."

Slimming World have resources available in an Easy Read format which can help make the weight management support more accessible for members, such as adults living with BBS, who have visual impairments, learning difficulties or disabilities.