Kendall Stevens, 11, comes out in blisters on her hands and feet after just the slightest knock, making even simple tasks like riding a bike or writing difficult.
The stinging pain can leave her bedridden.
But brave Kendall, who has to wear gloves round the clock to protect her hands, has had some pain relief after taking anti-depressants as part of a 12-week clinical trial.
The trial has been monitored by Great Ormond Street Hospital, London, where doctors are hoping amitriptyline could be a breakthrough for Kendall's condition, epidermolysis bullosa.
Kendall's mum Jane certainly noticed the difference. Mrs Stevens, of First Avenue, Horndean, said: 'She was able to walk a little further and hold a pen for longer because she wasn't in as much pain.
'She was able to have better nights' sleep too, which could make a big difference. She still has to wear the gloves all the time – but that's second nature to her now.'
Kendall, who attends Horndean Junior School, said: 'Anything that makes the pain go away is good.'
The anti-depressant treatment is the latest bid to fight the disease by Kendall's family.
In 2005, Kendall's dad discovered that wearing close-fitting climbing gloves helped prevent Kendall's hands coming out in blisters.
Kendall has also been bought a laptop for school so that she can type rather than write. A teacher's assistant has been having to do this for her when her hands are too sore.
This year Kendall will start senior school and plans are in place to help her.
She will be able to leave class before the bell rings to prevent her from being bumped by other pupils.
Jane said: 'She's able to lead a relatively normal life. She loves swimming and recently went in a canoe, which she has always wanted to do.'
The results of the clinical trials are now being analysed by researchers.
Mrs Stevens added: 'Anything that helps people who suffer with this condition is a good thing.
'Kendall has decided she wants to be a doctor of dermatology and help other people with EB, so I know she is willing to try anything to help other sufferers.'
Sally Turner, EB clinical nurse specialist at Great Ormond Street Hospital said the trials are looking at whether amitriptyline, usually a treatment for depression, can be used.
She said: 'We already know it can help some people who have pain but we don't know if it will help children who are suffering with EB.'
jeff.travis@thenews.co.uk