'I live with unusable hands - after rare condition turned out to be another even rarer one'

Lindsey Edwards, 28, was diagnosed with a uncommon information earlier commencement earlier doctors aboriginal recovered she had another, adjacent rarer, syndrome which affects lone 200 radical worldwide

A pistillate was calved with a uncommon condition leaving her incapable to usage her hands, aft doctors initially thought she had a antithetic ailment.

Lindsey Johnson Edwards was 13 erstwhile she was told she had a information known arsenic Cloves Syndrome (Congenital Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis/skeletal/spinal). Affecting lone 200 radical worldwide, it caused her fingers to beryllium swollen and unusable for galore regular tasks astir radical would instrumentality for granted.

As a effect the present 28-year-old is incapable to usage her hands. Before her birth, doctors believed she had Klippel Trenaunay Syndrome, which causes varicose veins and limb hypertrophy, earlier the update.

Lindsey, a PhD pupil from Texas successful the USA, said: “When I was successful the womb, the doctors knew thing wasn't rather right. Originally diagnosed with Klippel Trenaunay Syndrome, my household and I rapidly learned fewer doctors had adjacent heard of my illness and adjacent less knew what to bash to attraction for me.

"Little did we know, I would aboriginal beryllium re-diagnosed with a illness that had yet to beryllium developed oregon identified. I bash not person relation successful my close hand, and my relation successful my near manus fluctuates depending upon a assortment of factors similar swelling, weather, nervus compression, wellness complications, and truthful on. While I person learned to usage my limbs successful unsocial ways successful bid to maximise my constricted function, I bash trust connected assistive technology, disablement aids, and different people.”

Her Cloves diagnosis means Lindsey indispensable trust connected different radical for mundane tasks, specified arsenic washing up oregon cooking, arsenic putting excessively overmuch strain connected her hands tin origin problems. She added: “As a PhD student, for example, I utilise dictation bundle to transcribe papers. Though I tin inactive physically benignant connected peculiar devices, I enactment excessively overmuch accent connected my hands and consequently origin wellness complications if I effort to benignant much than a wordy paragraph.

"At home, I trust connected galore "hands-free" devices, specified arsenic a stroke dryer stand, to assistance conscionable my regular needs. Most importantly, however, is I person learned to utilise the radical astir me. I person ever been arsenic self-sufficient and autarkic arsenic possible, but arsenic my illness has progressed, I person travel to presumption with my limits and seen the quality of dependency.

"I person radical astir maine that privation to assistance with tasks I tin nary longer do, similar washing the dishes. When I let others to assistance maine execute what I tin nary longer do, I springiness radical a tangible mode to amusement that they care.

"Allowing others to "be my hands" is mutually beneficial for some maine and my loved ones, who privation to assistance maine but are not definite what they tin bash to help. Letting them navigator meals oregon bash my laundry gives them an outlet to explicit their attraction for me."