Three Indian sisters who were branded ‘untouchable’ due to an extremely rare skin condition have walked for the first time after having surgery to remove the huge growths from their feet.
Gitarani Sethi, 12, and her younger sisters, eight-year-old twins Ganga and Jamuna, all have Olmsted syndrome, a congenital disease that causes abnormal thickening of the palms and soles.
The girls appeared to be healthy at birth in Bhadrak, in Odisha, eastern Indian.
But as each one reached their first birthday, thick painful lumps of skin began to grow on the soles of their feet.
It meant they could never wear shoes, would suffer indescribable pain if they tried to walk, and other children run from them in horror, branding them ‘the untouchables’.
The girls’ father Abhimanyu Sethi, 46, and mother Padma Devi, 36, who met in an arranged marriage, have been forced to carry their daughters everywhere – or they crawl.
WARNING: GRAPHIC CONTENT
Walking for the first time: Sisters Ganga, Jamuna and Gitarani (L-R) have never walked since they were all born with an incredibly rare skin condition on their feet. They are pictured with their Abhimanyu and Padma
The girls all have Olmsted syndrome, a disease that causes abnormal thickening of the palms and soles. Only 73 people in the world are known to have had the condition. Pictured: one of the girls’ feet before surgery
The condition, which can cause severe itching, has meant the girls had to crawl everywhere
Scores of doctors turned them away, having never heard of the condition, which has been reported in just 73 people worldwide.
Finally, after a decade of searching for treatment, a team at a local government hospital agreed to operate free of charge.
Just under a month after the operation, all three girls are starting to take their first steps – and their father is overjoyed.
‘They’ve never been able to lead a normal life. People in our area treated them like they were the “untouchables”,’ Sethi, who works as a laborer earning just 200 rupees ($3) a day, said.
‘People were scared to come close to them and people would actually run away from them if they saw them.
‘Our neighbors and people in society would even refuse to share cutlery and plates with my daughters in case they got infected. If we invited anyone round for dinner they’d tell our girls to go in another room. It has ruined our lives; we’ve had no life.’
The couple, who are not related, said they could not believe all three of their children were born with the same extremely rare disease.
Sethi said: ‘It was around Gitarani’s first birthday when she started with red patches and small lumps on her feet.
Life of pain: Gitarani, 12, would have needed a leg amputation if the sores on her feet had developed much more, doctors said. She was not able to put any weight on the 10-inch-long skin growths, leaving her very weak
The girls’ parents, who are not related, could not believe all their daughters were born with the same condition
Treatment: After a decade of searching for treatment, the family found a team at a local government hospital who agreed to treat the girls for free. Others doctors turned them down, having never heard of the condition
New lease of life: The girls are now taking their first steps. Their parents said they were branded ‘untouchable’ in their community, with people refusing to come near them. Conventional medicine did nothing to help
‘We tried homeopathy treatments for a year but it made no difference so then we tried conventional medicines for two years, but we again saw no relief.
‘We then went to several doctors but they said she needed expensive treatment so we suffered at home.
‘Then we had our twin girls but we were shattered when we realized they were suffering the same disorder.’
As years passed Abhimanyu and Padma felt trapped in their home, unable to face the abuse from their community and too poor to afford the help for their children.
The sisters were forced to rely on each other for company and play mates, and have never made any friends.
But last month the family received a ray of hope when they visited Shrirama Chandra Bhanj (SCB) medical college, in Cuttack city.
By this time Gitarani had ten inches of hard skin growing from the soles of her feet, while the twin girls’ suffering was in the early stages in comparison.
Abhimanyu said: ‘We were told that this hospital might be able to help us so we tried them and we were overjoyed when we met a doctor who wanted to help.’
Dr Bibhuti Bhushan Nayak, assistant professor in the cosmetic surgery department, at SCB, spent five days examining the girls until he eventually decided to perform a complex peripheral excision surgery last month to remove the infected tissue.
Dr Bibhuti said: ‘These three sisters are suffering from a rare genetic disease called Olmsted syndrome. I had never seen such a condition before, it was all very new to me so the treatment was something new also.
‘The oldest girl was unable to put any weight on her feet so it was impossible for her to walk. If her condition got any worse and an infection spread into her legs she would have been at risk of needing an amputation.
‘We decided to remove the affected layers of skin and grafted the skin. It’s been around 20 days now and we are happy to see the girls recovering at a good speed.
‘All three have started walking even. While the younger ones can walk confidently, the older one is still in a little pain but she will improve with time.’
Olmsted syndrome (OS) is a rare inherited genetic skin condition classically characterized by abnormal thickening of the skin on the soles of feet and periorificial keratotic plaques.
OS includes hair and nail abnormalities, leukokeratosis, corneal default and recurrent infections.
The sisters are now under observation at the hospital but since their surgery they have been able to stand and have started walking for the first time. The doctor will now monitor to see if the infection grows back or heals
People suffer pain and itching in variable stages but in some it can be severe.
The disease can start either at birth or early childhood and only 73 cases have been reported worldwide.
The sisters are now under observation at the hospital but since their surgery they have been able to stand and have started walking for the first time.
The doctor will monitor how their skin heals and if there’s any possibility of the infection growing back.
Dr Bibhuti said: ‘Since it’s such a rare disease we are trying new treatment. We need to keep them under observation and they’ll need regular check ups every three months.
‘We’ll send them home with special orthopedic footwear that will help with walking but if the skin and infection returns we will have to operate again.’
Abhimanyu is overjoyed to see his daughters stand and walking but he fears for the future. He added: ‘I am so happy to see all of my girls standing on their feet. It gives me the confidence that my dream of sending them to school will be possible. We can only pray for the future now.’