Johannesburg woman has skin so fragile it blisters at the slightest touch

A woman who has skin so fragile it blisters at the slightest touch spends four hours a day bathing and dressing her wounds.

Shirvani Naran, 35, from Johannesburg, was born with Recessive Dystrophic Epidermolysis Bullosa – an extremely rare and incurable skin condition – which leaves her with blisters and third-degree burn-like injuries at even the smallest contact.

She is unable to do daily tasks such as picking up items, opening bottles, chopping vegetables or even turning on a tap without breaking out in painful lesions.

She was born with Recessive Dystrophic Epidermolysis Bullosa – an extremely rare and incurable skin condition – which leaves her with blisters and third-degree burn-like injuries at even the smallest contact

She is forced to wrap herself up in bandages like a mummy on a daily basis.

The disease causes skin to blister both externally and internally and has even caused the mum-of-three’s eyes, inner ears, and throat to react.

Each evening, Shirvani spends four hours bathing and dressing her wounds from head-to-toe to keep her agonising condition under control.

Shirvani, a full-time mum said: ‘Just getting bathed every day takes up the most time in my day – it’s a whole process.

She is unable to do daily tasks such as picking up items, opening bottles, chopping vegetables or even turning on a tap without breaking out in painful lesions

The full-time mum-of-three Shirvani posed with her newborn Luke but says she has to be careful because her skin is so fragile

‘I have never ever had a “quick shower” – there’s no such thing for me.

‘Just a bath itself takes about one-and-a-half hours because I have to be so careful because my skin is so fragile.

‘After washing in salty hot water to cleanse my wounds, my routine involves taking off all my bandages from head-to-toe, then adding oil to get the stuck bandages off and re-dressing the wounds.

‘Sometimes four hours have passed before I’m finally finished – it’s exhausting.

‘My days are extremely long and sometimes I’m only getting to bed at 2am.

Each evening, Shirvani spends four hours bathing and dressing her wounds from head-to-toe to keep her agonising condition under control

‘But I always make sure I do my bandages late at night and in the early hours when the kids are asleep, so I don’t feel I’m taking time away from them.’

Shirvani lives with her husband Shimal Naran, 36, a business analyst, and three children, one of whom is from a previous relationship.

Shirvani was born with the condition and has spent her life trying to keep the symptoms at bay.

She recalls the first moment she was aware of her condition when her skin blistered at the age of three.

She said: ‘One of my earliest memories was when I picked up an acorn in the park and my whole hand blistered and I just remember dropping the acorn because I was in so much pain.

The disease causes skin to blister both externally and internally and has even caused the mum-of-three’s eyes, inner ears, and throat to react

‘I looked at my hand and it was covered in blood. The other kids were playing and picking stuff up and I just remember thinking: ‘What is going on?’

‘That’s the moment I realised I was different.’

Shirvani recalls being isolated as a child at school and her younger sister, Kerusha Govender, 34, being her ‘only friend’.

She said: ‘Kerusha was my rock. She deprived herself of so many things to look after me, her big sister.’

Shirvani was learning to live with her condition during early adulthood, but when she fell pregnant with her first child, her skin reacted unlike ever before.

Shirvani lives with her husband Shimal Naran, 36, a business analyst, and three children, one of whom is from a previous relationship

In 2011, Shirvani experienced a traumatic birth with her firstborn, who was born via c-section, as she experienced severe internal and external blistering throughout her body which she has yet to recover from.

She recalled: ‘When I was pregnant for the first time, I blistered not only around my bump but also around my legs, feet and lower back due to the pressure of carrying my baby.

The mum-of-three added: ‘Then when I delivered [her], the birth left me with open wounds all over my body, from head-to-toe, so much so that my skin has never fully recovered over a decade later.

‘Injuries occurred during birth which doctors did not know what to do about and when they brought my mum in to help, she just looked at me and cried.

‘It got to the point where I was left to lay on the bed as they were too scared to handle or touch me.’

Shirvani was unable to hold her newborn daughter for another 10 days due to her open wounds which was another source of trauma for the new mum.

She recalled: ‘I felt so angry and sad that everyone else had seen and held my own baby before me. It was truly a horrendous experience.’

Since becoming a mum, Shirvani has learnt to adapt to daily tasks such as balancing a milk bottle on top of her hand because she can’t grasp it, and asking for help when changing her son’s nappy.

Though Shirvani has come to navigate motherhood with her condition now, she revealed it has taken time.

In 2018 and 2022, Shirvani gave birth to her two other children, which she said was an ‘entirely different experience’.

She said: ‘Thankfully I knew how to handle it this time round so the blistering was totally under control.’

Shirvani believes the challenges of her condition have led her children to possess a greater empathy and compassion for others, especially those with disabilities.

Shirvani was unable to hold her newborn daughter for 10 days due to her open wounds which was another source of trauma for the new mum

Shirvani considers motherhood to be ‘the most fulfilling thing’ that’s ever happened in her life, but also recognises that her condition prevents her from doing what most mothers take for granted and forces her to watch from the side-lines.

She said: ‘There’s so much that you have to adapt to – there’s lots that I can’t do with the kids like catching a ball, rolling on the grass, pushing them on the swings or bouncing them on the seesaw.

‘It’s things that people do on a daily basis that I absolutely cannot.

‘Mothers don’t know how blessed they are to just get up in the morning and put on a tracksuit and take their kids to school.

She added: ‘It makes me sad, but they are so understanding about what I go through, and we bond in other ways like sitting and cuddling together.

‘My son has also taken such an interest in cooking, so he helps me in the kitchen.’

Shirvani was born with the condition and has spent her life trying to keep the symptoms at bay

Over the past couple of years, Shirvani has started sharing her experience of her condition on TikTok and she feels more confident ‘showing off’ her skin.

She said: ‘My message has always been to focus on self-love and spreading body positivity which is so important as there are so many women who go through body image problems on a daily basis for things, which in my mind, are quite trivial.

‘So, I like to say: ‘Look at me, look at all the things that I go through and still achieve.’

One of Shirvani’s remarkable achievements includes studying for a three-year bachelor’s degree in business management from the University of South Africa while pregnant with her youngest child.

She said: ‘I really want to inspire other women and I feel like I have an amazing story and testimony to share.

‘I’ve decided to speak out now because I believe it would almost be an injustice if I don’t share it.’

Shirvani was aware of her condition when her skin blistered at the age of three (Shirvani as a child)