Jen Mills for Metro.co.ukWednesday 22 Feb 2017
Teenager with skin so fragile she can’t hug or eat shows photos of her wounds
Madisyn, pictured in 2011
A girl with skin so delicate she cannot eat or hug her family has released graphic photos of her wounds to raise awareness of her illness.
Madisyn Yuhas, 18, has to wear bandages from the neck down and is fed through a tube because even chewing anything gives her severe blisters to her mouth.
She suffers from a rare genetic condition called Recessive Dystrophic Epidermolysis Bullosa, which means her skin can tear off with the lightest friction.
People born with the disease are known as butterfly children, because their skin is seen to be as fragile as a butterfly wing.
Madisyn, from Pennsylvania, cannot just hug her family to get some comfort as something as simple as a cuddle could shred her skin down to the muscle.
‘There is no cure for Madisyn’s condition so every day is a struggle for her,’ her mum Mary Yuhas, 46, said.
‘Any time she brushes up against something, if she opened a door, slipped on her shoes or even moved in bed she could tear her skin.
‘Once at school when she was standing in line, someone stepped on her foot and it ripped the whole top layer of her skin off, right down to the muscle.’
Madisyn, who weighs just six stone because of her illness, needs more calories than a normal teenager of her age because repairing the wounds and skin damage, and fending off infections such as MRSA, takes a lot of energy.
she is severely underweight as she has to be fed through a tube in her stomach day and night, only consuming foods by mouth that do not requiring chewing.
‘The pain means she eats very little and requires nightly liquid feedings through the tube,’ her mum said. ‘If we can’t get fluids or meds into her she has to be admitted to hospital.’
‘To lessen the effects, we wrap her up entirely in bandages from head to toe for protection.’
To combat the effects of the condition, which can be fatal, she has a daily bath that can last for up to four hours and has blisters on her skin lanced to prevent infection.
Mary said: ‘Every other day we give her a bath with bleach in the water to keep the infection down, after that we do the typical limb dressings and treat anything new that’s came up.
‘We lance the wounds to make sure they don’t grow, after taking out the fluid we give her antibiotics, and wrap her up.’
Doctors realised Madisyn had the condition, which affects one in 20,000 people, when she was born without skin from her knee down.
Over the years, the condition has progressively worsened.
Up until her early teens she was a dancer but has recently had to quit due to the extreme damage to her feet and is now predominantly confined to a wheelchair.
Mary said: ‘We bandage her from the tailbone to the back of her neck, her feet, occasionally we can leave her arms and hands unwrapped, but she’s pretty much always covered up.’
Madisyn’s family are fundraising to help meet the cost of necessities such as bandages, medication and lotions, all of which keep her alive.
Visit her GoFundMe page here