Charlotte’s story is one of courage, pain, and hope. From a young ballet dancer to a rare disease survivor who faced life saving surgeries, comas, and countless setbacks, she never stopped believing in the gift of life. Today, she channels her experiences to transform healthcare and inspire others to find strength in their struggles.
In July 2014, Charlotte graduated with a first-class honours degree in Health and Human Sciences from the University of Sheffield. That September, she began a master’s in European Health Law and Policy.
Only two months later, in November 2014, Charlotte was unexpectedly diagnosed with two rare neurological diseases. The speed and severity of her condition led to major brain surgery in January 2015.
I chose utopian realism. Life was still a blessing, even when I was facing brain surgery.
The procedure was extensive: the back of her skull and top vertebrae were removed so surgeons could access the cerebral structures needing laser treatment. Charlotte woke up with 22 stitches running from the nape of her neck upwards.
At the time of her diagnosis, Charlotte was signed with a modelling agency and had been a passionate dancer since the age of two, primarily in classical ballet but also in many other styles. She even taught dance.
“I had always been known as ‘Charlotte the dancer’ among family, friends and peers and I very much identified as that myself.”
The transition from being active, vibrant, and aspirational to a patient facing life-changing surgery was one of her biggest challenges.
Eight months after surgery, determined to move forward, Charlotte returned to university in September 2015 to pursue a master’s in Global Justice.
Charlotte’s symptoms began around the age of 13 with persistent spinal and head pain, but they were repeatedly attributed to her “intensive training schedule” or “hormonal changes.” No further diagnostics were carried out, and she learned to live with the pain.
“Like many in the rare disease community, I faced delays in diagnosis. It often takes five years and several specialists before we get answers. Those delays affect treatment outcomes and even prognosis.”
Since her major surgery in 2015, Charlotte’s health has continued to fluctuate. Despite ongoing treatment plans and uncertainty about her long-term health, she built a successful career as a Business Operations Manager in the NHS.
In her first year of employment, she was honoured with the ‘Rising Star’ Staff Excellence Award. She pursued continuous professional development to give her best to the National Health Service.
Though my life hadn’t turned out how I imagined, I accepted the cards I was dealt and sought to make the most of every single day.
In 2018, Charlotte was prescribed a medication by secondary care that wasn’t properly monitored by primary care. This oversight led to severe and rapid weight loss.
Her symptoms were initially misdiagnosed as an eating disorder and mismanaged during a four-month inpatient stay. This delay in appropriate care caused organ failure in 2020, leaving Charlotte on end-of-life care.
“While in a coma, a DNR was added to my notes against my family’s wishes. Doctors told them that if I woke up, I would likely have brain damage.”
Miraculously, she woke up with no brain damage.
For a long time, I felt guilty for surviving, as if I was cheating life. But standing on a pier one day, I felt only gratitude to simply be alive.
This episode left Charlotte battling PTSD from the trauma of mismanagement and the near loss of her life.
Charlotte’s recovery took three years, during which she completed another degree a master’s in Philosophy and set her sights on returning to work.
Due to her health needs, she required the flexibility of working from home. Despite her impressive qualifications a first-class honours degree, two master’s degrees, QSIR Practitioner certification, and the NHS Leadership Academy Mary Seacole Programme she was repeatedly turned away.
“The pandemic proved that home working needn’t be a crisis for employers, yet in 2023 I was still unable to find work that used my skills. The push to return to physical workplaces threatens diversity and makes work exclusive again.”
In November 2023, Charlotte finally found a lifeline when North West Anglia NHS Foundation Trust offered her business transformation work as part of their bank staff.
Soon after, she faced another life-threatening health scare. On December 8, 2023, she suffered a respiratory arrest at home following a routine tri-monthly hospital treatment she had been receiving for years.
“Had my neighbour an intensive care consultant not been home that day, I wouldn’t be here. He supported my breathing for 20 minutes until the ambulance arrived.”
Remarkably, Charlotte recovered and returned to work the following week thanks to her employer’s understanding and support.
In April 2025, she was appointed substantively and later received the ‘Outstanding Individual’ Staff Excellence Award.
I’m endlessly grateful to my colleagues at North West Anglia NHS Foundation Trust. They’ve shown what it truly means to be an inclusive employer.
Today, Charlotte is not just a dedicated NHS professional but also a Rare Disease Charity Ambassador, Vice-Chairperson of her Trust’s Disability Staff Network, and an active contributor to the Culture Improvement Programme.
“Sharing my story isn’t always easy, but I do it because I know it gives others strength and because I want to see true healthcare equity.”
Charlotte continues to live with chronic pain, yet her love for life outweighs her suffering.“Every single day, I am thankful to be alive. I don’t strive to be happy or sad; I find peace in equilibrium.Even when I was at my weakest, my ability to be kind and to love remained untouched. We all have that power. Use it.”
She believes that kindness is a force everyone can offer, regardless of their circumstances “A candle loses nothing by lighting another.”
Charlotte’s journey reflects resilience, compassion, and unwavering hope. She proves that even in hardship, we can find purpose and contribute to the lives of others.
Communication, compassion, collaboration, coordination these are free at the point of delivery and can be perfected in healthcare. They save lives as much as medicine does.
Her story serves as an example of how suffering can be turned into meaning, encouraging others to enjoy life to the fullest and lead with compassion.
