Charity IIH UK partners with 1FitLife to launch specialist online wellbeing videos

Volunteer led charity, IIH UK has partnered with digital workout creator, 1FitLife, to create specialist activity videos as part of the charity’s ongoing work to encourage people living with Idiopathic Intracranial Hypertension (IIH) to improve their wellbeing.

IIH is a rare neurological condition associated with raised fluid pressure around the brain, causing disabling daily headaches, brain fog, fatigue and visual loss, which can be permanent. The condition can affect anyone but is found more frequently in women (90%) and is common in teenagers and young women. IIH is more often found in those with increased body weight, and recent studies show IIH is more than a disease of the brain and eyes and that people with IIH are insulin and leptin resistant and have fat programmed for making more fat, suggesting an underlying metabolic problem too.

An IIH UK survey found that 78% of people with IIH who were advised to lose weight were not offered support in achieving it and 84% of those that were offered support did not find it helpful and appropriate. In response to these figures IIH UK has teamed up with leading agency for fitness and wellness content creation, 1FitLife, to create bespoke wellness videos that offer the IIH community a beneficial, safe, expert-led wellbeing programme that goes beyond just focusing on weight loss.

Amanda Denton, IIH UK Trustee and Research Representative explains: “There is currently no known cure for this condition, and the symptoms can change daily. This means people living with IIH are very much on the back foot in terms of managing their condition. Many people diagnosed with IIH report feeling like the ‘walls are closing in’ and find it difficult to get out, so it was important for us that the programme is accessible and achievable from home. Whilst there is a link between losing weight and getting the condition into remission, this is not true for everyone, and we also know that IIH can make normal opportunities for physical activity difficult because people living with IIH often experience low moods and anxiety in addition to their physical symptoms including fatigue, headaches and dizziness.

“Our research shows that many people living with IIH want to exercise more but are scared that certain movements, especially bending down and going on to the floor, could make their symptoms worse.  This can be another huge obstacle for someone accessing new or unfamiliar activities.  It was therefore critical for us to develop positive wellbeing opportunities that are reassuring to the IIH UK community and designed with their condition specifically in mind.”

The videos feature Fionnuala Donovan, Highly Specialist Physiotherapist for Neurology Outpatients at London’s Guy’s and St Thomas’ Hospital, whose IIH UK funded research identified the need for physical activity opportunities specifically designed for those living with the condition, and how exercise can have a positive impact for their overall long term wellbeing.

Donovan says: “It was imperative that the content was relatable and achievable for the IHH community.  So the videos feature manageable segments including a five minute warm up and cool down and 10-minute sections on cardio, strength, balance and core. We also created a video specifically to aid relaxation, which included mediation and breathing techniques.

“All exercises are demonstrated by myself to offer reassurance and validation of the content, with ‘real life’ people who live with the condition exercising by my side.  All exercises have seated options and provide opportunities to rest, with 30 seconds of exercise followed by 30 seconds of rest.”

The content and post production were all produced at 1FitLife’s studios in Bournemouth. Director of Production and Fitness, Anna Langridge, says: “We are passionate about creating positive exercise content that communicates with a particular community or condition, to help make their lives better and fuller.

“The videos have specifically been designed with the understanding that on some days a participant may only be able to complete the five minute warm up, and on others they might feel up to doing more; for example the standing up modifications.  Being able to dip in and out of the content is important in making these videos sustainable for this particular community, giving people living with IIH the opportunity to exercise safely at home with the reassurance the experts have put the programme together for them.”

Amanda Denton, IIH UK Trustee and Research Representative concludes: “We’re thrilled with the quality of the bespoke workouts 1FitLife has produced. 1FitLife understood our vision and tailored the feel of the videos perfectly to suit our audience. We can’t wait to introduce these workouts to our community and see the positive effects they’ll bring.”

IIH UK plans to use the content on its website and in conjunction with CIC Hope for the Community’s self-management and wellbeing programme for people with the condition.