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Born with blisters

A rare skin condition means India's skin is fragile like a butterfly.

India
India Sultana, 15, Sebastopol, Vic


Tumbling off my bike, I screamed in agony as the skin on my hands and knees tore away. 'That's it, India,' my dad Joe said sternly. 'No more riding.'

Sobbing, I nodded reluctantly as Dad bandaged me up. 'We need to go to hospital,' he sighed.

'We'll see Annie,' my mum, Sandra, now 43, reminded me.

Annie was a Raggedy Anne doll the nurses at the hospital kept just for me. She even had a wristband that said India's doll.

You see, this was no ordinary bike accident. I had a rare genetic skin condition called recessive dystrophic epidermolysis bullosa - EB for short. My skin was extremely fragile and could blister just by being touched.

I shouldn't have been riding the bike at all, but I desperately wanted to be like my sisters, Rachel, 18, and Danielle, five, and my brother, Paul, 12. It didn't seem fair I couldn't do all the stuff they did.

'You had a blister on your thumb when you were born but the doctor said it was from sucking your thumb,' Mum had told me when I was old enough to understand. 'At two weeks you got one on your left heel and I knew something wasn't right.'

Tests showed I had EB - sometimes called butterfly skin because of the skin's fragility.

I was bandaged from head to toe and I couldn't crawl because the skin on my hands and knees peeled off. I eventually learnt to walk wearing kneepads to protect my legs when I stumbled.

There were still frequent trips to hospital though - including the time Dad hugged me too tightly. 'Sorry darling!' Dad said as I screamed in pain.

It made me wary of letting people touch me - even doctors.

EB also affects the internal organs, and my mouth and oesophagus were so tender I could only eat soft foods like casseroles and soups.

The first time I saw a dentist it had to be in hospital. And although he knew about my skin condition, my mouth blistered and my lips split after he touched me. I couldn't eat or drink for days. 'I didn't realise it was so serious,' he apologised.

My life was one of bandages and creams. My skin blistered at the slightest touch. Dad would pop them to relieve the pressure and bandage me up to prevent infection.

'I don't want anyone to touch me,' I'd sob, pushing Dad's hand away. 'It's got to be done, darling,' he would say gently.

Sometimes Mum had to hold me down but it upset her so much she generally left it to Dad.

At school the other kids teased me. 'Scaly skin!' they'd say.

'Don't worry. They don't understand,' Danielle said. 'You're just like everyone else.'

But I knew it wasn't true. I couldn't even wear the uniform because it irritated my skin and I had to watch on sports days.

Sometimes I pretended to be like the other kids. One time I couldn't resist the monkey bars. But as soon as I gripped them, the skin on my palms peeled off and I crumpled on the ground.

'Annie's waiting to help you get better,' Mum soothed as she drove me to hospital.

I even got blisters underneath my fingers and toenails, and my scalp was so tender that brushing my hair was agony. 'I'll do it,' said my brother Paul, lathering up my hair with conditioner and brushing gently. He was so patient and spent hours untangling knots.

A year later my skin was so bad I couldn't walk. I needed a wheelchair. The relief for my feet was heavenly but at school I was embarrassed. Although nobody ever said anything, I could feel their stares.

The only good part was that Danielle could ride on the back of the chair. 'Let's go!' we'd squeal as Dad wheeled us along.

When Danielle and I each got a little fox terrier, my dog, Tinker, knew instinctively that my skin was delicate. She'd gently put her paw on my leg and wait to see my reaction before nudging her face closer. And if we were out and someone came near me, she'd snap at them.

I loved having Tinker but then we got an even more exciting addition to our family - a baby brother called Zac.

'Does Zac have EB?' I asked.

'No,' Mum said. 'EB is rare. You're very special.'

Not long after Zac was born, Dad got sick. 'I've got leukaemia,' he told me. 'You're old enough to pop your blisters now.'

At first I was horrified.

'Be strong,' Dad encouraged, showing me what to do. I was surprised how easy it was.

But Dad's fight with leukaemia wasn't as easy. 'When I die, your skin will get better,' Dad promised me. 'I'd rather have you here,' I sobbed.

When he passed away just a few weeks later we were all devastated. He was only 41.

I waited for my skin to get better but it didn't. Still, Dad's idea that my skin would recover made me more determined to care for myself and get out of my wheelchair. Every night I checked myself for blisters and had an oat bath to slough off the dead skin. Then I'd slather on cream and bandage any wounds.

By the time I started high school I was walking again. But I was worried about my patchy hair and scarred skin. 'You're a beautiful girl,' Mum said. 'Just a bit fragile.'

I'm now 15 and have hospital check-ups twice a month. I need an operation to widen my oesophagus as the scarring has caused it to narrow. I don't want it done but I know it's inevitable. I can barely eat and the pain is so bad I'm seeing a pain-management specialist to find ways to help me cope.

But my best coping tool is my family. Danielle's my best friend and Zac, now five, is a great help.

'You'd better pop that blister, India,' he'll say. 'Shall I get some bandages?'

EB is a lifetime condition. I can't go shopping with my friends because my feet blister, I'd love some skinny jeans but I can't wear tight clothes, and at the beach I need waterproof shoes to protect my feet.

But I always try to remember that beauty is only skin-deep. Deep down, I know it's what's on the inside that counts.


Butterfly Day on November 23 raises money to support research into EB. What is EB?

  • Epidermolysis bullosa is a group of diseases which causes blistering to the skin.
  • EB can be inherited as a result of an auto-immune response.
  • There is no cure for EB. Treatment includes dressings, bathing, pain relief and nutritional supplements.
  • Fewer than one in a million children are born with EB.

Visit www.debra.org.au for more information about EB.

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