Pippa Barrett, a 31-year-old freelance software developer from Cumbria, has described living with hypermobile Ehlers-Danlos syndrome (hEDS) as feeling like she is wearing a straitjacket 24/7, with periodic stabbing pain in her spine. It took 26 years to receive a diagnosis, after years of symptoms including voice cracking, crippling anxiety, depression, severe migraines, and episodes where her throat felt like it was closing.
Childhood and early symptoms
As a child, Pippa's ankles would frequently roll over, which her family attributed to clumsiness. In her teenage years, her voice would crack like a boy going through puberty, and she suffered from severe headaches, anxiety, and depression. At age 18, while on holiday, she was suddenly struck by an agonizing stabbing sensation throughout her body that never went away. She spent the holiday crying in pain, forcing her to drop out of her A-levels and ending her relationship. 'It was incredibly isolating. I felt like a shell of a person,' she said. 'It crushed everything in my life.'
University and worsening health
Despite the setback, Pippa retook her A-levels and at age 20 began studying biomedical science at Leeds Beckett University in 2015. While there, she continued to participate in sports, including kayaking and running, dreaming of becoming a professional runner. However, she was living a dual existence, pretending not to be in pain. At 21, she developed severe acid reflux and episodes where her throat closed, leading to a diagnosis of eosinophilic oesophagitis, a chronic immune condition that makes swallowing difficult. She now follows a very restricted diet, avoiding acidic and spicy foods like garlic, onion, and black pepper.
Migraines and diagnosis
By age 23, Pippa developed severe migraines causing vomiting, blind spots, zigzag lines, and flashing lights. The attacks left her curled up in the foetal position and led to multiple A&E visits. Finally, at age 26, after seeing a rheumatologist, she was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). According to the NHS, hEDS is a connective tissue disorder characterized by joint hypermobility, joint pain, fatigue, and digestive problems. There is no definitive test; diagnosis is based on medical history and physical examination. Doctors told her that hEDS explained all her long-standing health problems, including her teenage voice issues, which are caused by connective tissue laxity affecting the vocal folds and airway.
Impact on running career
Around the time of her diagnosis in 2020, despite being approached by coaches for the national team, Pippa realized a professional running career was no longer feasible. 'I looked really fit and healthy, but people struggle with it,' she said. Giving up running left her feeling lost, and her migraines worsened as she lost fitness. She has since taken up climbing, which acts as physiotherapy for her joints, though she notes that being too sedentary also triggers pain and migraines.
Current struggles and fundraising
Pippa continues to live with daily discomfort affecting her relationships, energy, and ability to work. She recently had to quit her job as an online tutor due to pain. She is now fundraising via GoFundMe for private nerve blocking treatment. 'It feels like I put one fire out, and another starts – a treatment for one condition can make another worse,' she said. 'It would mean the world to me, it would change my life.' To donate, visit www.gofundme.com/f/help-pippa-access-urgent-medical-care.
