Close your eyes and imagine falling on your knees and scraping it so badly that it opens and bleeds. You try cleaning it but it burns to the touch leaving you in tears every time. You try asking for help, but no-one is able to assist you, because no-one knows what to do with a wound of your kind. Eventually, after much pain and tears, you manage to close up your wound, only to find that it’s soaked through some time later. You start unwrapping your bandage so that you can rewrap the wound with new ones. But every movement hurts, and when you eventually reach the end of the bandage- the one covering the wound itself – you yelp in pain as if thousands of pins and needles were stabbed into your leg all at once – because the bandage had somehow stuck to the wound. With tears streaming down your face, you carefully undo the bandage and put every possible measure in place to ensure that the liquid and blood from your skin doesn’t seep through. You try going about your business in as best a manner you can, but the pain is unbearable. Still you push through, because you know the world out there won’t understand your pain. You’ve experienced it all too often. All they see is a bandage (which signifies healing) so the world expects you to show no signs of pain and demands that you fulfil your obligations to ‘them’. As time goes by, you happen to catch sight of your bandage only to realise that it’s soaked through again and that you’d need to have it changed ASAP, just as you had done not too long before.
An unbearably painful thought, wouldn’t you agree?
Now imagine this bandage change was your daily life. Imagine having to be the one putting your child through such excruciating pain on a daily basis, or seeing an accidental knock of the arm cause his/her skin to blister or chaff and the only one who can make everything okay, is the one that has to put your little one through unbearable pain. Imagine you have family come over and see your child in this condition, and chide your little one for being lazy and looking for excuses not to do what they’ve been asked. Imagine your child has to hear an uncle, aunt or cousin comment on the odour that follows them everywhere and blame it on their lack of hygiene when in fact it is the liquid from their wounds that creates that smell… sometimes only a few short hours after they’ve bathed. Imagine having to endure a two hour bleach bath, because nothing else cleans the lesions that covers your entire body quite like bleach does. And it burns… man oh man does it burn! Imagine having to then endure a bandage wrap – sometimes from head to toe – fully aware that this process will have to be repeated in the next day or two, if not sooner. Imagine your child wanting to play with other children, but they refuse because s/he ‘looks funny’ and they do not want to play with a ‘mummy’, or because the games your little one is able to play is ‘boring’ and ‘uneventful’. So your child sits on the sideline… day in and day out… hoping that someone would be kind enough to extend them a loving hand. Hoping that one day their skin would heal and they’d be invited to play with other kids their age. Imagine walking into a shopping mall and having all eyes on your baby, children flitting away from your child out of fear and adults giving them the disdainful eye. Or worst yet, dragging their child away from yours because they deem your child to be something detested and contagious, even after you try explaining the situation to them. Now see these scenarios through the eyes of your child and ask yourself “how would they feel?”
This is a life of EB. It’s extremely painful, and exhausting for both the patient and their caregivers. Can you ever imagine having to carry a supply of needles, specialised wound dressings, bandage, gauze, painkillers, sterile scissors and tape wherever you go. And that doesn’t even include the moisturiser, fan, medication and whatever else is required from keeping your child from breaking out in blisters. And let’s not get started on all the other complications brought about by EB. And if, God forbid, you ever forgot your dressings at home, it’d cost you a minimum of R250 (in South Africa) to purchase it at the shops…that’s to say they even have that specialised dressing in stock.
There are days when things are relatively easy, and then there are days when patient and caregivers alike feel like giving up and going into hibernation.
This is why we create awareness. Creating awareness isn’t just about putting the word out there and hoping for the best. It goes much deeper than that! We raise awareness of this rare skin disorder because the vast majority of people know nothing about it, to such an extent that when we, the caregivers, walk into a doctor’s office for the first time, we expect to educate them on our butterfly’s condition, not because we’re ‘know-it-alls’ but because most doctors have never heard of it. Though EB is primarily described as a rare genetic skin disorder, it affects so much more than that. As a given, EB patients generally have regular check-ups with a dermatologist, paediatrician (if the patient is a child), dietitian, dentist, and occupational therapist, some patients, depending on the severity of their EB and added complications, have to endure several more.
We’re passionate about raising awareness so that health care providers know what to do when an EB patient steps into the room, and so that insurance companies can understand that the countless painkillers and medical supplies aren’t unnecessary but are as important to those with EB as the air they breathe. We need to bring awareness to the masses so that our children do not grow up as outcasts, and end up having low self-confidence and loathing the skin they’re in. Creating awareness of this skin disorder is far more than just informing people of the condition; it’s a chance at providing hope for children who, even in moments of joy, experience nothing but pain, and hopefully in raising awareness, we can find a cure.
To all the beautiful souls who took time out to learn about EB and show care and concern butterflies the world over, we thank you. Thank you for your support and helping keep our glimmer of hope alive in our darkest hours. Thank you for loving and accepting our butterflies and always ensuring that their unusual needs are met. Thank you for taking the financial off our shoulders, even though we’ve never asked you for a dime. And lastly, thank you for spreading awareness. May the Almighty preserve you and reward you in abundance for all that you. For surely we cannot imagine our lives without you.