Sisters born with the Harlequin disease are hoping for a cure
Warning: This article contains images that some viewers may find disturbing.
Lucy Betts is an 18-year-old girl from the UK. She was born with a rare form of the skin condition Ichthyosis called "Harlequin." Harlequin is a serious incurable disease that usually claims the lives of infants within their first few months of life. Only one in a million children is born with this disorder.
When Lucy's parents were ready to have another child, they thought the chances of having a baby with the same disorder was near impossible, but their second daughter, Hannah, was born with the same condition. Apparently the siblings of a child with Harlequin have a 1/4 chance of also having Ichthyosis.
The skin of these two sisters renews more quickly than normal skin. This encloses the child's entire body in an armor of skin, reducing movement of their arms and legs and affecting their facial features.
According to a specialist in Pediatric Dermatology, Professor John Harper, skin disorders can be very serious and even fatal, “The skin is a vital barrier which separates us from the outside. It protects against infection, it’s metabolically active and regulates temperature; it regulates fluid loss. When you are born with defective skin, it's a major problem.”
However, Lucy and Hannah are happy to have each other for support. Every day they have to take a two-hour bath and coat their skin with special ointments. The whole ordeal can be very painful.
— Lucy Lou ☺ (@lucylou87) 26 juin 2016
The Bowen sisters thought they were the only siblings with this disorder, but one day their doctors proposed introducing them to another set of sisters, Dana and Lara, who are also going through the same thing. There is currently medical research being done to hopefully find a cure.
— Lucy Lou ☺ (@lucylou87) 17 juillet 2015
Lucy said, "I always said I’d like to wake up one day and just see what I would be like if I didn’t have it... but it wouldn’t really be me.”
The siblings met eight years ago and have maintained contact ever since. Recently, they got news that a genetic research team had isolated the gene responsible for the disorder. Hopefully, a cure will follow shortly!
Here is a video of the girls' story:
Lucy, Hannah, Dana, and Lara hope that they'll soon experience what it's like without their disease. It's wonderful to see their courage and optimism shine through!