FOUR siblings have the same rare and debilitating skin condition
The family treated as outcasts: FOUR siblings have the same rare skin condition which has destroyed one’s nose and blinded another
- Javid, Maria, Sobia and Aaaliza Hussain all have xeroderma pigmentosum
- The skin condition causes severe sunburn and cancer, and cannot be cured
- Sobia, 17, lost part of her nose to the disease and her sister Aaliza’s eyes bleed
- The family say the government promised help but just sent them rice
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Four siblings all suffer from an extremely rare skin disorder that has eaten away one of their noses and blinded another.
Javid, 26, Maria, 19, Sobia, 17 and Aaliza, 9, all have xeroderma pigmentosum (XP), which makes them extremely sensitive to the sun’s UV rays.
The siblings, from a small village in Pakistan’s Sindh Province, live as outcasts because locals fear their condition is contagious.
After being promised government help that never came through, their parents have spent all their savings desperately trying to find a cure for their children, but no treatment has had any effect.
Their father Hussain Bux Sindhi, 48, who earns at most just £57 a month as a taxi driver, said: ‘I have even had to sell my house. The government only provided a few bags of rice.’
The Hussain family children, who all have xeroderma pigmentosum, live as outcasts in their village in Pakistan because local people fear the condition is contagious
Mr Hussain is speaking out to help raise money towards his children’s treatment.
XP has been described as a ‘one-in-a-million’ condition.
‘Blood is oozing out of her eyes’
Hussain, who lives with his wife Maheen Naseem, 40, claims local villagers force his children to live as recluses, saying: ‘They maintain their distance from them.
‘Some villagers often pass comments which hurt my children.’
The disease, which began when the children were just two years old, has eaten away Sobia’s nose and caused serious problems in the youngest sibling Aaliza’s eyes.
Maria and Javid are the oldest two siblings affected by the incurable condition, which causes their skin to have extreme reactions to sunlight
Aaliza, 9, (left) has been nearly blinded by the condition and blood oozes out of her eyes, while the condition has eaten away part of the nose of her sister Sobia, 17
Hussain said: ‘Blood is oozing out of her eyes affecting her eyesight.
‘She is in a terrible pain and often stays indoors.’
WHAT IS XERODERMA PIGMENTOSUM?
Xeroderma pigmentosum (XP) is an inherited condition that causes extreme sensitivity to UV rays from the sun.
It has been described as a ‘one-in-a-million’ condition.
XP is brought on by a genetic mutation.
Sufferers require complete protection from the sun, including clothing, sun cream and dark sunglasses.
Eighty-to-90 per cent of sufferers also experience:
- Joint pain
- Cognitive problems
- Teeth abnormalities
Due to sufferers being at high risk of sunburn, skin cancer is extremely common among patients.
There is no cure for XP.
Management of the condition includes protection from UV light, frequent skin examinations and prompt removal of any cancerous tissue.
Source: National Center for Advancing Translational Sciences
‘I have even had to sell my house’
Hussain said: ‘I have taken them to different hospitals in Pakistan for 26 years but doctors say there is no cure for this disease.
‘I have even had to sell my house. I live in a rented accommodation now.
‘Doctors prescribe sunscreen lotions, gels and body supplements for temporary relief but ultimately they don’t work.
‘They just said to keep my children away from sunlight.’
After being promised government help seven months ago with no follow up, Hussain has taken to social media to ask the public to help fund his children’s treatment.
He said: ‘The government only provided me some eatables and a few bags of rice.’
Last Saturday, Hussain uploaded videos and pictures of his children online.
People have donated nearly £1,000 to help the family
By Tuesday afternoon, people had donated nearly 150,000 Pakistani rupees (£960) towards their treatment.
Hussain said: ‘There has been a tremendous response.
‘I have received dozens of messages and calls from people across the country expressing their solidarity.
‘I hope the money will help getting treatment for my daughter’s eyes.’
Father Hussain Bux is trying desperately to find a treatment for his children’s debilitating condition – he has spent all his savings and sold his house, and has raised nearly £1,000 on social media
Because the skin of people with XP is so sensitive to UV rays, doctors told the family to keep the children out of the sun
Sufferers should cover their skin at all times
Xeroderma pigmentosum is a rare genetic disorder which causes the skin to become extremely sensitive to UV rays from sunlight.
People with the condition are more vulnerable than normal to sunburn, so need to keep their bodies covered at all times.
It also makes sufferers more susceptible to skin cancer, and can cause joint pain and cognitive problems.
Sobia, 17, left, has lost part of her nose because of XP and her sister Aaliza, 9, right, has serious problems with her eyesight
Because the condition is rare it cannot always be diagnosed quickly – one woman in the US found out she had XP when she had already developed skin cancer by the age of 12.
Lizzie Tenney, 22, develops severe sunburn after the slightest sun exposure and has had to undergo skin-cancer surgery 43 times.
Despite suffering extreme symptoms since she was a baby, the rarity of XP meant doctors only identified Ms Tenney’s condition when she was 12 years old and went to a dermatologist with ‘sores’ that turned out to be skin cancer.
Ms Tenney, from Highland, Utah, is forced to wear a bee-keeper style hat every time she steps outside, has coated her house and car in special ‘sun cream’, and relies on a meter that measures the sun’s UV rays.
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