Epidermolysis Bullosa and the Story of Adana Forsyth (The Butterfly Girl)

April 13, 2014 | 0

Adana Forsyth was regarded as the “Montrose butterfly” because her skin was as fragile as the membranes of wings of butterfly. Until her death on Saturday 23 November 2008, she struggled with a genetic defect known as epidermolysis bullosa (EB). Her condition caused the skin to blister even with the slightest touch or a trauma. This is something that forced her to endure pain throughout her life. Adana died after he had struggled with the rare condition for almost ten years.

Adana was born with the worst form of the skin condition epidermolysis bullosa, which is presently incurable. The condition is extremely painful causing the skin as well as internal lining to blister, peel, and bleed at the very least of touch or trauma. The children with this skin condition are called butterfly because the skin is likened to the fragile and delicate membrane of the winds of butterfly.

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You can image how such skin would wear out when touched even with the slightest force or friction. The child really endured a lot of pain. She touched the hearts of many in the nation and was chosen by a skin charity DEBRA, which led a national television advertisement campaign in order to highlight her disorder and raise funds to help in finding a cure for the condition.

When Adana was eight, her mother got a glimpse hope when scientists in Dundee reached the brink of finding a cure for the condition. During this time, the condition was worsening and her mother was helplessly watching her for months as she battled severely with the condition as it deteriorated. It was positive news for the mother and she said that was fantastic. She always kept positive that doctors would find a cure that could help her child come out of the dismay.

Dystrophic Epidermolysis Bullosa Research Association- DEBRA raised awareness of “butterfly syndrome” by featuring Adana in a television commercial which helped fund the compaign. The DEBRA organization was established in 1978 for those people suffering from Epidermolysis Bullosa and their families. Adana’s condition was soon diagnosed when she was born on the 12th January 1998.

Her parents were informed that their daughter was suffering from the severest form of EB. When Adana was a toddler, the mother used to put her in snow suits in order to try to reduce the damage that was being caused on the skin when she bumped herself or when she fell over. Adana had to be wrapped daily in bandages in order to protect the skin from infections. In addition, he was taken to Great Ormond Street Hospital in London frequently for treatment.

The mildest of the epidermolysis bullosa conditions is the EB simplex which affects the outermost layer of skin cells but although it is distressing, it has a better outlook than what Adana was ailing from. Another form of epidermolysis bullosa is the functional EB that affects the glue which holds the outer layer of skin cells onto the inner layer. This condition is usually fatal in infancy.

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With Adana, she had the dystrophic EB which affects the deep layers of skin causing blistering and scarring. Children with this condition live with a lot of pain. People with the severe forms of EB have exceptionally high risk of cancer, something that reduces their lives by 30 to 40 years

Adana Forsyth- Pictures

Adana Forsyth  pictures Adana Forsyth butterfly girl Epidermolysis Bullosa Adana Forsyth Epidermolysis Bullosa pictures


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