Amy Ironside Wood, a 38-year-old woman from Nottingham, faced years of debilitating symptoms that she initially thought were due to a common cold. Her journey toward discovering the real cause of her illness began in 2017 when her young daughter, Willow, brought home glandular fever from nursery.
While Willow quickly recovered, Amy’s symptoms persisted and worsened over time. At first, she attributed her increasing fatigue and weakness to a minor illness, but as her condition deteriorated, she found herself experiencing debilitating symptoms, including fainting spells, extreme exhaustion, and difficulty standing or walking.
“I felt a level of fatigue I could never have imagined as a healthy person – my heart would race when I rolled over in bed, as if I’d just run up a flight of stairs,” Amy recalled. “My legs were so weak that I felt my knees would buckle after standing for just a few minutes.”
After six months of visits to doctors and several blood tests, Amy was diagnosed with myalgic encephalomyelitis (ME), a condition often known as chronic fatigue syndrome. Desperate for answers, she spent countless hours researching her condition, hoping to find something that could improve her quality of life.
“I tried every diet, supplement, and medication I could find that claimed to help with ME,” she said. But in 2022, Amy’s search for solutions led her to a life-changing discovery. She watched a talk by American filmmaker Jennifer Brea, who had experienced her own battle with ME and found remission after undergoing neurosurgery. The idea of a potential cure sparked a renewed sense of hope in Amy, and she felt she would do anything to regain her health.
Determined to find a solution, Amy traveled to Barcelona to see a specialist, where in 2022 she was finally diagnosed with craniocervical instability (CCI), a rare condition in which the skull is not securely attached to the spine. This condition explained many of the symptoms Amy had been struggling with for years, and she felt both relief and disbelief upon receiving the diagnosis.
CCI requires expensive treatments, which can range from invasive surgeries to stem cell injections. Amy is now focused on raising the funds necessary to undergo these treatments, which could finally help her reclaim her life after almost a decade of suffering.
In 2023, Amy launched a clothing brand called Not Dead Apparel to help fund her treatments. The brand sells items featuring slogans such as “Tired Girl’s Club,” “Wish you weren’t here,” and “Live. Laugh. Lie Down,” with all profits going toward her medical expenses. Despite her physical limitations, Amy runs the business while others handle the embroidery, and the brand has gained traction, especially after one of her hats was promoted by an influencer.
In addition to her CCI diagnosis, Amy was also diagnosed with a tethered spinal cord in October 2024, a condition where the spinal cord is attached to the surrounding tissue, limiting its movement. The surgery to address the tethered spinal cord could cost between £17,000 and £20,000, and Amy hopes to have the procedure done in the near future.
One of the treatments for CCI involves stem cell injections, while another would require fusing her skull to her cervical spine, which could cost between £80,000 and £200,000. Amy continues to weigh her options and is determined to find the right course of treatment.
Despite her ongoing health challenges, Amy remains hopeful. However, she admits that the social isolation caused by her condition is the hardest part. She struggles with basic activities like taking her daughter to the park or being in noisy public spaces, as these worsen her symptoms.
“I can’t take my daughter to the park or for days out, and I can’t be in restaurants or cafes because the ambient noise worsens my symptoms a lot,” she said. “The social isolation is the hardest thing about it.”
Amy’s journey is a testament to her resilience, as she continues to fight for her health while advocating for awareness of rare medical conditions. She encourages others facing similar challenges to never give up on finding answers and solutions, as she did in her pursuit of better health.
