Finding Strength in Support: Helen’s Journey with Kyphoscoliosis

Living with a complex spinal condition like kyphoscoliosis presents daily physical and emotional challenges, but for member Helen, it’s also been a journey of resilience, community support, and the power of consistent care.

Through a network of local services, therapists, and her own determination, Helen has found a way forward and brings warmth and positivity at each visit to our Wellness Hub.

Helen was diagnosed with kyphoscoliosis – a condition combining both kyphosis and scoliosis – at the age of 21, although it likely developed at birth. Back in the 1960s, when Helen was born, prenatal ultrasounds weren’t routine. Her condition remained unnoticed until weight loss in her early twenties revealed the curvature in her spine.

Now living with 70-degree curves in both the upper and lower spine, Helen experiences daily struggles: chronic pain, fatigue, balance issues, reduced appetite, and a high risk of falling. Surgery was ruled out due to its dangers – it would require fusing nearly her entire spine, with a 30 per cent risk of paralysis.

Despite all this, Helen remains upbeat and determined to live a full life.

Helen’s path to better health began with a referral from her GP, which led her to join Lincs Inspire’s Active Forever programme. A 12-week scheme that saw Helen benefit from the Wellness Hub at the Grimsby Health and Wellbeing Centre.

After finishing the programme, Helen continued attending the leisure centre, through other support schemes, including the O’Flynn Foundation, and more recently Careers Shift.

“I find I get on better with the chairs than the recumbent machines,” she said with a smile – referring to specially designed power-assisted exercise equipment that helps to build strength and mobility.

“The equipment at the leisure centre is marvellous. It supports all kinds of different people with a wide range of medical conditions. For me it has helped in so many ways.”

Regular sessions have helped improve Helen’s posture, strength and overall quality of life. She has also reconnected with her community and has regained a sense of purpose and joy in daily life.

Lincs Inspire recommended Helen speak to another North East Lincolnshire based charity - the O’Flynn Foundation. The Foundation is focused on mental health, stroke support and degenerative neurological conditions, and they have provided further invaluable support to Helen.

Jayne O’Flynn, Founder and Trustee, said: “Supporting Helen continues to be an absolute pleasure. As well as ensuring some continuity with Lincs Inspire’s Active Forever programme, we help with therapeutic treatments offering not just physical relief but also restore confidence and wellbeing.

“Whilst the NHS provides crucial care, community-based and preventative approaches like what Lincs Inspire and our charity can offer, are just as important. Helen’s story goes beyond her diagnosis. It touches on the importance of connection, purpose, and being seen.

“It’s always a pleasure to meet Helen to see how she’s getting on. Some people say, ‘poor me.’ Not Helen. She gets up and goes.”

If you’ve been moved by Helen’s story and would like to discover more about Lincs Inspire’s  referral wellbeing programmes, pop along to their free Wellbeing Fayre.

Alternately,  speak to your GP or health professional about a referral, visit www.lincsinspire.com/activeforever or phone (01472) 323200.

The equipment at the leisure centre is marvellous. It supports all kinds of different people with a wide range of medical conditions. For me it has helped in so many ways.