A 29-year-old woman from Chester is facing the prospect of a potential double leg amputation after years of battling severe arthritis, a condition she says was not taken seriously by doctors.
Phoebe Phillips, who has been living with psoriatic seronegative inflammatory oligoarthritis since 2019, has been left with no remaining cartilage in her knees, making it incredibly difficult to walk. She has had to advocate for herself “over and over and over again” to get treatment, and now faces the reality that a double knee replacement is the only course of action, with a potential double amputation above the knee later in life.
A long and painful journey
Phoebe’s symptoms began in October 2018 when she was 21, with her right knee “blowing up overnight.” After being initially dismissed by her GP, she was eventually diagnosed with psoriatic seronegative inflammatory oligoarthritis in March 2019 by a rheumatology consultant at the Countess of Chester Hospital.
Despite trying numerous medications, including methotrexate, sulfasalazine, JAK inhibitors, and biologic immunosuppressants, her condition has “progressed massively.” She says the pain was “so severe that my GP had to prescribe tramadol and liquid morphine just so I could survive the days.”
Missed opportunities and regret
Phoebe feels she was repeatedly “dismissed” by doctors and that her concerns were not heard. She asked for scans “over and over again” but was told it was just the disease, and even when she requested an orthopaedic referral, she was told no one would look at it because of active inflammation.
“I’ve missed out on my entire adulthood so far,” she said. “It’s really the small things that are so much more important to me. Just to be able to go up and down a couple of stairs like a normal person… Standing in the shower and not having to sit down – all the small stuff.”
Looking to the future
Phoebe has been advised that a double knee replacement is her only option, but she understands the replacement joints will wear out and need repeating every 10 years, eventually leading to a double above-the-knee amputation. Despite this, she is willing to take the risk, saying “being an amputee would actually be better than what I’ve been dealing with.”
She is now fundraising to seek private care, hoping to try an injectable drug called arthrosamid before surgery, and has set a GoFundMe goal of £6,000 to cover initial consultations and treatment.
“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,” she said.
A spokesperson for the Countess of Chester Hospital NHS Foundation Trust 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.”
