By Nathalie Bonney @nathaliebonney
Scroll down for the full story
Videographer / director: Bahareh Hosseini
Producer: Nathalie Bonney, Ruby Coote
Editor: Thom Johnson
Sohana Collins’ morning routine takes longer than most: on schooldays the 16-year-old wakes up between 6-7am while her mum, Sharmila, carefully unwraps Sohana’s bandaged arms, then uses surgical needles to prick her daughter’s painful blisters before cleansing and moisturising Sohana’s paper-thin skin.
Sohana suffers from Epidermolysis Bullosa, a rare genetic condition commonly referred to as the butterfly syndrome because skin is as delicate as a butterfly’s wings.
After dressing Sohana’s arms, chest and back; Sharmila goes through the same careful routine all over again, this time on her daughter’s legs and feet. In total it can take one and a half hours to change Sohana’s dressings in the morning and over two hours in the evening.
Sohana, from North London, told Barcroft TV: “It takes about one and a half hours dressing in the morning and I think it takes longer in the evening because I’m walking around more on my feet. So I get more blisters.
“It’s quite normal to wake up with quite a lot of blood on my pillow. I bleed a lot overnight just from sleeping.
“I don’t really remember the time when I was completely pain free because normally there is always something hurting. Obviously I don’t go around my daily life thinking 'that hurts' but I don’t really remember a time when there was actually nothing hurting.”
The oldest of four sisters, Sohana is the only one with the condition, which she was born with.
Mum Sharmila remembers learning of her newborn daughter’s diagnosis.
She said: “Sohana was completely normal-looking apart form a very small patch on her neck but by the next morning the skin had been rubbed off of her ankles and her feet from the plastic tags that they put on at birth.
“And it took them a day or so to realise that it was Epidermolysis Bullosa, but we didn’t know what type at the time. They had to take a biopsy and it took the hospital two weeks to come back and then we got the news that she had one of the severest forms, which was a real shock to the system.
“It would mean lifelong disability, a lot of pain and risk of skin cancer and that was quite hard to swallow.
“They gave us a very special pillow on discharge at the hospital. And we used to carry her around in this very special pillow. She stayed on that pillow pretty much for six months.”
There are approximately 5,000 people in the UK with EB and Sohana’s form of EB – recessive dystrophic - also prevents her from eating many foods because of the potential damage to her oesophagus.
Sohana said: “Recessive dystrophic affects the eyes and the mouth and throat so, this means that throughout the day I need to put eye drops in to make sure that my eye doesn’t stick to my eye lid and then cause an abrasion.
“When I eat I normally have to eat whizzed up foods like the texture of a yoghurt.”
Growing up, Sohana missed out on various milestones: she never learnt to ride a bike, climb a tree or even play catch but she wants to focus on what she can do rather than what she can’t.
Having successfully completed her GCSEs, Sohana is now taking ‘A’ levels in her favourite subject English Literature as well as Spanish, Maths and an Art EPQ.
Sohana said: “To be honest everything that I can’t do I kind of wish I could because, of course no body would like to have those kind of limits and I would like to try new things obviously.
“Whatever things I do there’s always gonna be some difficulties but you can always kind of find a way around it. Say for example, what I can do are things like swimming because the water and chlorine is good because it cleans the wounds so it is quite nice but it’s quite stingy when you first enter the pool.
“I just get in very, very slowly and then I like to swim around.”
Year-round Sohana covers her arms and legs. She tends to wear gloves to protect her hands - something mum Sharmila introduced and which is now recommended to all EB patients - and sunglasses, if the sun is particularly bright, to protect her eyelids.
She said: “When I go outside sometimes people still ask questions and every one stares a lot. When we are travelling, we got to security when some one said I can’t go on the plane because I am contagious. I am like, ‘No, I am not. It’s genetic.’
“I just see the funny side of it because that’s just how I deal with the problem.”
In spite of the challenges she endures Sohana insists in other ways she is just like any other teen - a teen that just happens to have helped her parents charity raise £5 million towards medical research.
“I think physically I am quite different to most people but mentally I am probably the same,” she said.
“I think it’s important to have people with the condition campaigning to help others and themselves with the condition just because they actually have it.”
At the moment there is no known cure for EB. In 2011 Sohana’s parents Sharmila and James started the Sohana Research Fund, now called Cure EB, to raise funds into further medical research. The charity has a host of celebrity supporters backing it, including patron Damian Lewis, as well as Tom Hiddleston, Kate Moss and Benedict Cumberbatch.
Sharmila said: “In the space of time we have been fundraising we have managed to raise over £5 million for EB research, which is good but quiet frankly its not enough.
“We need to have the flexibility to move forward to gene therapies and now we are into clinical trial phases. There are definitely treatments on the doorstep.
“We want to try treat as many people with EB as possible and as quickly as possible so we need to break down some of the barriers and raise awareness of the condition."
When Sohana was 11, along with other children, she underwent stem cell treatment at Great Ormond Street Hospital; although not a cure, the stem cell therapy has shown significant improvements in the health and skin condition of those who undertook it.
She said: “In general my skin was a lot less red and it was a quite a lot less itchy as well.
"The stem cell treatment really helped a lot.
“I think just because a treatment is not a cure, it does not mean it should not be pursued because it can improve the lives of people living with the condition so much.”