In a groundbreaking initiative, volunteer-led charity IIH UK has joined forces with digital workout creator 1FitLife to launch specialised activity videos aimed at enhancing the wellbeing of individuals grappling with Idiopathic Intracranial Hypertension (IIH).
This rare neurological condition, characterised by heightened fluid pressure around the brain, inflicts debilitating daily symptoms such as headaches, brain fog, fatigue, and vision impairment.
The partnership seeks to address the lack of support for weight loss among IIH patients, with a staggering 78% not receiving adequate assistance and 84% finding the support provided ineffective
Amanda Denton, IIH UK Trustee, emphasizes the importance of accessibility and feasibility, particularly for those confined to their homes due to IIH-related challenges.
Acknowledging the varied symptomatology and potential hurdles to physical activity, Denton underscores the significance of tailored wellness initiatives designed specifically for the IIH community.
Highly Specialist Physiotherapist Fionnuala Donovan at London’s Guy’s and St Thomas’ Hospital, played a pivotal role in shaping the content of the videos.
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 meditation 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.”
With insights gleaned from IIH UK-funded research, Donovan underscores the need for exercises that cater to the unique needs and limitations of IIH patients.
The videos feature manageable segments, including warm-up and cool-down routines, cardio, strength, balance, core exercises, and relaxation techniques, all carefully curated to ensure safety and efficacy.
Anna Langridge, Director of Production and Fitness at 1FitLife, expresses their commitment to creating inclusive exercise content that resonates with specific communities or conditions.
The videos offer flexibility, allowing participants to engage at their own pace and according to their daily fluctuations in energy levels.
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.”
The videos are poised to make a significant impact, empowering the IIH community to embark on their journey towards improved wellbeing from the comfort of their homes.
IIH UK plans to integrate these invaluable resources into its website and collaborate with CIC Hope for the Community’s self-management and wellbeing program, further extending the reach and impact of these specialised wellness videos.
This collaborative endeavour marks a significant step forward in supporting individuals living with IIH, offering them practical tools to navigate their unique challenges and foster holistic wellbeing.