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had blisters and sores on large parts of her body particularly her legs

Time:2018-04-15 15:44Shoes websites Click:

rare genetic condi rare skin condition renal failure worst disease rare skin

WHEN first-time mum Simone Baird was told her newborn baby Eliza had a rare skin disease that meant her body would be covered in painful blisters, peel at the slightest touch and cause her a lifetime of pain, she was absolutely devastated.

“The whole feeling that rushed through my body was overwhelming, I was almost hyperventilating,” Mrs Baird told news.com.au. “We were first-time parents and had no idea what we were doing, let alone caring for a child with high medical needs.

“I knew our whole life was about to change, and it did.”

When she was born, Eliza screamed for the first five hours of her life and was transferred immediately to intensive care at another hospital with her dad, while Mrs Baird was kept in the maternity ward.

“The first night, I had no baby and no husband and I was just left wondering what the hell had just happened,” she said.

After a series of tests and an agonising two-week wait for the results, it emerged that Eliza had epidermolysis bullosa (EB) — a rare, excruciatingly painful and little-known genetic skin condition described as “the worst disease you’ve never heard of” — that affects around 1000 Australians and more than 500,000 people worldwide.

Eliza Baird was born without skin on large parts of her body. She had the rare genetic condition epidermolysis bullosa.

Eliza Baird was born without skin on large parts of her body. She had the rare genetic condition epidermolysis bullosa.Source:Supplied

It affects three layers of skin and internal mucosal linings and has been likened to living with third-degree burns. As a result of missing the collagen or “glue” that sticks layers of the skin together, children with EB — known as “butterfly children” as their skin is so fragile — can blister from the slightest touch.

Friction caused by clothes and nappies can put them at risk of blistering or infection. While it can sometimes be detected at birth, milder cases of EB will generally be discovered as a child becomes more physically active and starts crawling, walking or running.

Currently, no cure exists and at its most severe, life is often cut short due to skin cancers or secondary complications associated with the disease.

Sadly, it took Eliza’s life. She died of renal failure, a complication brought on by the disease, on December 12, 2017 aged 17 — six weeks shy of her 18th birthday.

“My husband and I are gene carriers of this disease but we had no idea,” Mrs Baird told news.com.au. “Eliza was our first child. Out of all our family, she was the only person born with EB.

“It was a complete surprise. We were devastated. She had the worst type of EB you could possibly get. It was like she had burns all over her body.

“She had blisters in her throat, her oesophagus, she failed to thrive and was in an enormous amount of pain. As a baby, she was very unsettled, did not sleep because of the pain, did not grow normally.

“It was difficult to feed her ... her growing was affected by that.

“The first two years were extremely difficult. Her fine motor skills were always slower in developing which was limiting what she could do.

“It was very distressing and really challenging — you’re living on little sleep.

“It’s like you’re living in a war zone. You do not stop to reflect, you have got to keep fighting otherwise you will lose the battle.”

Eliza Baird, pictured aged six, had a rare skin condition and needed her limbs bandaged after having her daily bath. The bandages cost $3000 a month and are not covered by PBS.

Eliza Baird, pictured aged six, had a rare skin condition and needed her limbs bandaged after having her daily bath. The bandages cost $3000 a month and are not covered by PBS.Source:Supplied

Eliza Baird’s left knee covered in painful lesions and blisters from the ‘worst disease you’ve never heard of’ known as epidermolysis bullosa.

Eliza Baird’s left knee covered in painful lesions and blisters from the ‘worst disease you’ve never heard of’ known as epidermolysis bullosa.Source:Supplied

Eliza had to be given bleach and salt baths which would take between two to three hours every second day and would be bandaged daily.

She was in constant pain, had blisters and sores on large parts of her body particularly her legs, in her throat, her oesophagus, had to be fed through a tube and was on 24 different types of medication.

Over time, she gained weight and her face became puffy, her urine had blood in it.

Eliza was regularly on different types of antibiotics and often needed scar tissue removed from her throat — at one point she couldn’t even swallow her own saliva.

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