Angharad Brawn, 30, has been wheelchair-bound since childhood as a consequence of a thriller degenerative situation, which has left her with a curved backbone and needing a hip alternative
Angharad Brawn, a 30-year-old girl from the village of Ynysddu in South Wales, has been wheelchair-bound since childhood as a consequence of an undiagnosed degenerative situation that causes her joints to “grind collectively”. She makes use of portray as a way to distract herself from the persistent ache.
Born “completely wholesome”, Angharad started experiencing leg aches on the age of 5, which progressively worsened all through her childhood. By the point she completed main faculty, she was reliant on a wheelchair, and her well being continued to say no, resulting in scoliosis and necessitating a hip alternative at simply 18 years outdated.
Regardless of present process genetic testing, the place her signs had been in comparison with a uncommon genetic dysfunction, Angharad’s situation did not completely match, leaving her with out an official prognosis.
Her situation causes extreme ache in most of her joints, to the purpose the place she will “actually really feel (her) bones grinding collectively”. Unable to stroll or stand, she depends on a motorised wheelchair for mobility.
The longer term development of her situation stays unsure, with latest “scary” developments affecting her speech and swallowing talents. Nevertheless, over the previous two years, she has discovered solace in portray, which she says has helped her “rediscover (her) love of portray” and offers a welcome distraction from her ache.
Dedicated to her autonomy, Angharad has self-published a youngsters’s e book impressed by her personal story, frequently merchandising her inventive works at craft festivals and thru her private web site, along with participating hundreds of TikTok fanatics together with her creative abilities.
“I’ve by no means had an official prognosis, all of the geneticists I’ve seen have mainly mentioned they’ve by no means seen something just like the signs I’ve,” Angharad mentioned. “Being in ache is draining however there’s nothing that may be performed about it, I’ve simply obtained to get on with it.
“My artwork actually helps because it means I’ve to give attention to one thing else, my bungalow has usually obtained completely different initiatives I am engaged on throughout it, so I’ve at all times obtained some form of distraction at hand.”
Angharad, who was born with out obvious well being points, started feeling leg “aches” when she was round 5 years outdated.
“By the point I used to be seven, it was extra apparent I used to be struggling,” she recalled. “I began not with the ability to do issues, like driving a motorbike.”
She revealed that after being referred to an orthopaedic guide, it was initially suspected that she suffered from Myhre syndrome – an extremely unusual genetic situation.
Dissatisfied with the preliminary assessments, her mom, Deborah Gordon, insisted on additional opinions, main Angharad to bear quite a few exams, trialling various ache aid treatments and pursuing physiotherapy inside a group care framework.
By 9 years of age, Angharad resorted to crutches and had transitioned to full-time wheelchair use by the shut of her main schooling, finally taking to a motorised wheelchair at 14 to keep up her self-sufficiency.
Angharad’s medical journey started when her consultants had been unable to pinpoint a particular ailment, resulting in a referral to a geneticist on the age of 18.
Following quite a few consultations and blood exams, Angharad shared that her signs bore resemblance to Schwartz-Jampel syndrome (SJS), an unusual genetic dysfunction impacting muscle perform and bone growth.
Nevertheless, for a definitive SJS prognosis, Angharad would want to exhibit eight explicit chromosomal abnormalities; she solely has two, leaving her with no formal prognosis.
Her situation, which is degenerative and “slowly getting worse over time”, compromises not simply her bones but in addition her muscle mass and tendons, leading to myotonia muscle spasms that stop them from absolutely enjoyable.
“What’s significantly scary is that I’m now having issues with my speech and my swallowing,” Angharad mentioned.
She additionally talked about that her situation causes a “distortion” of her skeleton, together with scoliosis—a spinal curvature—which necessitated the insertion of metallic rods in her backbone at 16 years outdated.
At 18, Angharad underwent hip alternative surgical procedure to alleviate a few of her discomfort. Talking about her persistent ache, she described experiencing “good days and dangerous days”.
“I get ache in most of my joints, however particularly in my proper hip, again and shoulders,” she defined. “It’s actually tiring and, in most of my joints, I can actually really feel my bones grinding collectively.”
In August 2019, Angharad was provided a bungalow by Caerphilly Council, the place she now resides alone, with a group of carers visiting her within the mornings and evenings. Unable to stroll or stand, Angharad utilises a ceiling hoist to help her in transferring from her mattress to her wheelchair or bathe chair.
“I usually describe myself as stubbornly unbiased, I’ll at all times attempt to do one thing myself earlier than asking for assist,” she mentioned. “We have managed to arrange my care in a manner that’s actually versatile, so some days I may have much less assist.”
Angharad revealed that she had at all times dreamt of turning into a jewelry designer and attended the College of Jewelry at Birmingham Metropolis College. Nevertheless, her deteriorating hand perform led her to modify paths and pursue artwork as an alternative.
She now concentrates on portray animals, significantly birds, that are her favorite. Presently, she is engaged on filling a sketchbook with numerous chook species.
“I am right-handed, however my proper hand has at all times been my worse hand, so I’ve needed to study to color and write with my left,” she mentioned. “My fingers will also be shaky and I get a variety of muscle spasms. I feel that is why I choose portray animals, they usually haven’t got clean edges, so it does not actually matter if my fingers shake a bit.”
Angharad frequently finds methods to work round her incapacity in creating her artwork, promoting it at native festivals and thru her web site, byangharadstudios.com. Her TikTok web page has turn into a platform to showcase her artwork as nicely, incomes a “actually supportive” following of greater than 12,000.
Along with her visible artwork, Angharad authored, illustrated, and self-published a youngsters’s image e book named The Wobbly Penguin. The narrative attracts from her private expertise with a degenerative situation throughout her early life.
Though the long run trajectory of her situation stays unsure—doubtlessly necessitating elevated assist and a speech support ought to her verbal communication decline—Angharad stays optimistic.
“I simply need to present that although somebody might have a really apparent bodily disabling situation, they’re nonetheless combating to be as unbiased as they are often,” she mentioned.
