A 19-year-old woman has been left with a heavily wrinkled hand “like that of a 90-year-old” after a seizure caused it to clench into a fist for two weeks.
Neve Collins has been living with episodes of dystonia – uncontrolled spasms – since her early teens, as a result of a condition called autoimmune encephalitis, which occurs when the immune system mistakenly attacks the brain, causing it to become inflamed.
The condition, which causes seizures, often leads to spasms – and a recent one to her left hand, left her fingers balled up for 16 days.
Only a second spasm released it – revealing the severe change to her hand’s appearance.
The episode has left Neve with tight, wrinkled skin across her fingers and palm, with discolouration due to lack of air, plus sweat and moisture being trapped.
“It looked like that of a 90-year-old woman’s, or like I’d been in a swimming pool for years,” the sixth-form student, from Stafford, told Need To Know.
“It smelt foul.
“My hand had been dystonic for over two weeks.
“It was curled up in a fist and my fingers were very tight – it happened after a big seizure that I had.
“I then had another seizure and my hand released.
“It was really painful to hold open and very sore, but I was over the moon that it unlocked.
“Thankfully, it hasn’t locked up since.
“As the episode lasted over two weeks, my hand is very dry and cracked, quite sore to touch and very stiff.”
The episode happened earlier this month (May 2025), but Neve has been suffering on and off for five years.
She said: “I have had dystonia before, but never for this amount of time, and it’s never been so tight.
“The severity of this episode was much worse [than other times].
“My hand has now been unlocked for 12 days, and it still doesn’t look normal.
“The skin is peeling, dry and irritated – but I expect in time it will go back to normal.”
Neve’s dystonic episodes mainly affect her hands, wrists, feet and ankles, and can last a matter of seconds or for much longer – as in this case.
She visited a specialist, who gave her muscle relaxants to help with the pain and loosen the contractions.
Otherwise, she is left to bathe her hand and, with her mum’s help, massage the affected area.
Neve added: “Living with this condition leaves me feeling isolated and emotional – I just wish I could live a normal life and get a normal job, and do what every other teenager does, without having to plan around my disability.”
