A woman whose skin blisters at the slightest touch has revealed the trauma of going through pregnancy and birth with this painful condition.
Shirvani Naran, 35, 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 and is forced to wrap herself up in bandages 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, from Johannesburg, South Africa, says: ‘Just getting bathed every day takes up the most time in my day – it’s a whole process.
‘Just a bath itself takes about one-and-a-half hours as I have to be so careful because my skin is so fragile.’
After washing in salty hot water to cleanse her wounds, Shirvani then takes off all her bandages from head-to-toe, adding oil to get the stuck bandages off, and then re-dresses the wounds.
‘Sometimes four hours have passed before I’m finally finished – it’s exhausting,’ she says.
Shirvani lives with her husband Shimal Naran, 36, a business analyst, and three children, one of whom is from a previous relationship.
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.
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 says: ‘I blistered not only around my bump but also around my legs, feet and lower back due to the pressure of carrying my baby.
‘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.
‘I felt so angry and sad that everyone else had seen and held my own baby before me,’ she says. ‘It was truly a horrendous experience.’
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.
‘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,’ she says.
‘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.’
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 says: ‘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.
She adds: ‘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.
‘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.’
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 says: ‘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.
‘I really want to inspire other women and I feel like I have an amazing story and testimony to share,’ she says.
‘I’ve decided to speak out now because I believe it would almost be an injustice if I don’t share it.’
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