A South Wales woman has found solace in art while contending with a mysterious and debilitating condition that has gradually robbed her of mobility and left her in constant pain. Angharad Brawn, 30, from Ynysddu, has never received a definitive diagnosis despite a battery of medical tests spanning her entire life, yet remains determined to live as independently as possible.
Angharad says her life began much like any other child’s, but at age five she started experiencing unexplained aches in her legs. By seven, her struggles were apparent, and she was unable to participate in everyday activities like cycling. Medical professionals initially considered Myhre syndrome, a rare genetic disorder, as a possible cause, but further investigations provided no clear answers.
Throughout her school years, Angharad’s condition steadily worsened. She progressed from crutches at nine to needing a wheelchair by the end of primary school. By 14, she became reliant on a motorised wheelchair for her independence. Doctors referred her to geneticists at 18, and although her symptoms bore similarities to Schwartz-Jampel syndrome—another rare genetic condition affecting muscles and bone development—she never met the criteria for a formal diagnosis. Genetic testing found only two out of the eight specific chromosome abnormalities required for this diagnosis.
As Angharad explains, the most troubling aspect of her condition is its unknown nature and progression. “There are days when I feel like my bones are literally grinding together,” she says, describing pain primarily in her hip, back, and shoulders. Over time, her condition has caused serious complications, including scoliosis, a curvature of the spine corrected with metal rods at age 16, and a hip replacement at 18. Now, she’s begun to experience difficulties with speech and swallowing, adding anxiety about her future.
Despite these challenges, Angharad has channelled her energy into creative pursuits. Over the past two years, she has rediscovered a passion for painting, using it as a vital distraction from persistent pain. Her bungalow is often awash with sketches and art projects. “My art really helps me to focus on something outside my pain. There’s always something creative on the go,” she said.
Angharad’s commitment to independence is notable. She lives alone in a specially adapted bungalow provided by Caerphilly Council, using ceiling-mounted hoists to assist with daily tasks since she cannot walk or stand. While carers visit morning and evening, Angharad is staunchly self-reliant, explaining: “I’ll always try to do things myself before asking for help, and my support plan is flexible so I can retain as much autonomy as possible.”
Unable to pursue her early ambition of becoming a jewellery designer due to reduced hand function, Angharad turned her attention to painting. Birds are her favourite subject, and she has adapted to painting left-handed as her right hand is weaker. The obstacles are considerable; shaky hands and muscle spasms are frequent. Yet she embraces these challenges, remarking that animals, with their unpredictable lines, offer creative freedom even on unsteady days.
Her artwork, which she sells at craft fairs and online, has found a following on TikTok, where she shares her creative process with over 12,000 supporters. Angharad has also penned and illustrated a children’s book, The Wobbly Penguin, inspired by her life with a degenerative, undiagnosed condition. For her, this is as much about representation as it is about personal expression: “I just want to show that even though a disability can be very visible, people are still fighting to be as independent as they can be,” she asserts.
Angharad admits she has no way of predicting how her symptoms will change, believing that she may eventually require more intensive help—perhaps even a speaking device. But optimism permeates her outlook. Her artistic achievements and dedication to community, both online and off, serve as a testament to her resilience.
Her story highlights the strength of those living with undiagnosed or rare conditions, and the essential role of creativity and community in managing life-altering illnesses. As researchers continue to search for answers, Angharad’s courage and positivity shine a light on the importance of visibility and support for people facing uncertain medical journeys.