Phoebe Phillips, 29, is facing the prospect of double knee replacement surgery and eventual double leg amputation after her knee pain was initially dismissed by a GP. She says she has had to champion her own cause "over and over and over again" to secure treatment.
Diagnosis and Deterioration
Phillips was diagnosed in 2019 with psoriatic seronegative inflammatory oligoarthritis, a chronic joint disease linked to psoriasis. Over the last seven years, her condition has deteriorated to the point where all cartilage in her knees has disappeared, severely hampering her mobility.
Treatments offered over the years have addressed symptoms rather than the underlying cause, resulting in pain "so severe" her GP had to prescribe tramadol and liquid morphine. Her condition has now reached a stage where medical professionals have concluded double knee replacement is her only option – a procedure she'll need repeating throughout her lifetime before potentially needing a double amputation above the knee.
Missed Adulthood
Phillips first began experiencing symptoms in October 2018, when she was 21. She described how her right knee "basically just blew up overnight" and became "the same width as my thigh, and it felt really numb." After visiting a GP, she claims her concerns were dismissed, with the doctor suggesting she may have been "out dancing and tripped in your high heels, and you don't remember."
Four months later, she was referred to a rheumatology consultant at the Countess of Chester Hospital, where she received her diagnosis in March 2019. Since then, she has tried multiple treatments, including sulfasalazine, JAK inhibitors, and biologic immunosuppressants, but says she was "just never really told what the forecast was."
Current Condition and Fundraising
In April this year, an X-ray revealed her knees have no cartilage left, and her legs are now permanently angled and restricted in movement. She has been told the replacement joints will deteriorate over time, requiring the procedure to be repeated every 10 years, and that cumulative bone loss will ultimately leave an above-the-knee double amputation as the only remaining course of action.
Phillips is now considering private healthcare and has set up a GoFundMe campaign with a target of £6,000, which she believes would enable her to trial an injectable treatment called arthrosamid, developed for knee osteoarthritis, and secure preliminary medical appointments. She estimates the cost of a private double knee replacement would range between £12,000 and £16,000.
She said: "I want my life back. I want to stand up straight again. I lost my entire 20s to this disease, trapped in my house when friends and peers were out living, I couldn't often join them. I would love to be able to live a bit again, enjoy my 30s, maybe."
A Countess of Chester Hospital NHS Foundation Trust spokesperson said: "We are committed to providing high quality care for all our patients and their families. Whilst we cannot comment on individual cases, if patients or their families have any concerns regarding the care they receive, we would advise them to contact our PALS team on 01244 366066, or email cochpals@nhs.net who will be able to support them."
