A young girl with a rare disease that causes her skin to blister at the slightest touch is spreading awareness about the terrible pain of her daily routine.
Destiny Fuentes was diagnosed at birth with epidermolysis bullosa (EB), a rare, genetic tissue disorder that causes the skin to blister and burst, leaving raw sores that are susceptible to infections.
This means the 12-year-old, from Las Vegas, Nevada, has spent the majority of her life wrapped in bandages.
Despite the pain, Destiny has taken to regularly creating videos on YouTube and Instagram about her condition, showing viewers how she moisturizes her skin and wraps it tightly every day to protect herself.
She says that she hopes the videos not only educate, but provide help and motivation to other children with the same condition as her.
Destiny Fuentes, 12 (left and right), from Las Vegas, Nevada was diagnosed at birth with epidermolysis bullosa (EB), which is a rare, genetic tissue disorder that causes the skin to blister and burst, leaving raw sores that are susceptible to infections
She has lived most of her life wrapped in bandages, and the disease will cause her to eventually succumb to anemia, chronic infection, and potentially early death. Pictured: Destiny in the hospital
When Destiny was born, she had no skin on her ears, mouth or right leg and had to stay in intensive care for a month-and-a-half.
Doctors carried out biopsies on her skin and she was diagnosed with EB at just two weeks old.
Sufferers of the disease are missing type VII collagen – a protein that allows the top layer of skin to bind with the bottom layers.
The slightest movement causes the skin to constantly and consistently fall off and physical activities like walking or running can be very painful.
Sufferers of the disease are missing type VII collagen – a protein that allows the top layer of skin to bind with the bottom layers. Pictured: Destiny in a YouTube video talking about her condition
Destiny’s condition means she has to see her pediatrician once every three months and change her dressings every two days to keep her fragile skin protected and infection-free. Pictured: Destiny in a YouTube video talking about her condition
Destiny also receives iron infusions twice a month – because she is more susceptible to anemia – and attends occupational therapy. She has been hospitalized four times this year – for a week’s stay at a time – because of infection. Pictured, left and right: the blisters that form on Destiny’s skin
There is no cure for EB so the treatment aims at preventing blisters from becoming infected.
‘Basically, I have a layer of skin missing, the part that holds them together, so without this layer my skin is very fragile,’ Destiny said.
‘My body is covered in bandages to protect my skin from infections since I have open wounds and blisters.
Destiny’s condition means she has to see her pediatrician once every three months and change her dressings every two days to keep her fragile skin protected and infection-free.
She has been hospitalized four times this year – for a week’s stay at a time – because of infection.
Destiny also receives iron infusions twice a month, because she is more susceptible to anemia, and attends occupational therapy.
Despite being in constant pain and her condition affecting her mobility, Destiny has an incredibly positive outlook on life and describes herself and others with EB as ‘strong fighters who can handle it’.
She regularly creates videos for her YouTube channel, Our Destiny, about living with the condition after being shocked by the largely negative representations of it on social media.
‘I suffer a lot, I have pain 24/7. I don’t remember a day without pain,’ she said.
‘When I searched for Epidermolysis Bullosa on social media, all I saw was sadness and pain. Yes, EB is painful, but I want to show the world that you can also be happy, live a happy life.’
Destiny said it’s really important for her to remain positive and make people more informed about her disorder.
The 12-year-old (pictured, center, with her aunt and sister Desiree) regularly creates videos for her YouTube channel, Our Destiny, about living with the condition as well as sharing her story on Instagram
She said she decided create the videos after being shocked by the largely negative representations of EB on social media. Pictured: Destiny in the hospital
‘We have this condition because we are strong fighters who can handle it and we are brave enough to not let it hold us back in life,’ Destiny (pictured) said
‘If I am sad I think of the good things that I have and am thankful for,’ she said.
‘I think of other kids and how I can help them get through this or similar situations. It helps me stay strong for them and I always have hope that one day they will find a cure.’
As well as her YouTube channel, Destiny also shares her story on Instagram and as well as her advice to others living with EB.
‘I created my YouTube channel and my Instagram page to show how I live and manage EB but most importantly to spread awareness for this horrible disease,’ she said.
‘We have this condition because we are strong fighters who can handle it and we are brave enough to not let it hold us back in life. EB is not pleasant whatsoever but that does not mean we can’t live a happy life.’