EB Connect Spotlight: Shirvani Naran

Our one-of-a-kind EB Connect community is made up of individuals and families from around the world who are navigating life with EB. The EB Connect Spotlight series highlights these individuals and their unique stories.  

Today’s spotlight shines on Shirvani Naran, a Mrs Globe South Africa finalist living with Dystrophic EB. 

1. When were you diagnosed with EB? Please tell us about you and your family’s journey learning about the diagnosis.

Shortly after birth, my mom noticed some redness and raised skin around my wrists and ankles, in the area where the identity tags had been placed. She thought it was a rash. Later that day the nurses took me away to bathe me, and when I returned my mother was horrified to find that I had, what looked like, fluid filled blisters and skin peeled off in different areas all over my body. She thought I had been burned by hot water during the bath. The doctors and nurses were called in and they reassured her that I hadn’t been burned. She then noticed that when she or the doctors handled me and touched my skin, it stuck to their fingers and the latex gloves as it peeled off. That’s when they realised it was not burn wounds. A few days later after consultation with other specialists, I was diagnosed with Epidermolysis Bullosa. The severity was not known and the both the medical team and my parents were reluctant to conduct a skin biopsy due the amount of wounds I already had. The prognosis was very poor, and I was given 6 months to live. My parents were told to take me home, make me as comfortable as they could, and to not get attached to me because my survival was unlikely. 

The condition means that I have very fragile skin. At a genetic level, there’s a defect in my DNA which results in my cells not being able to produce the essential protein components like collagen, which are needed to “glue” and hold the layers of skin together. This causes blistering as the skin layers shift/slide off each other with friction. The skin very easily comes apart completely or peels off resulting in wounds that resemble third degree burns. My hands and feet have been disfigured, I’ve lost my fingers, toes and all my nails to mitten deformities and I have visible scarring throughout my body from repeated wounding. EB also affects internal surfaces like the linings of the throat, gut, ears, eyes and mouth which are all prone to blisters. My hair, bones, teeth and muscles are also severely weaker than normal as all of these parts of the body are made of different proteins which my body is defective in producing. I have difficulty in chewing and swallowing foods and liquids as a result of some of these impacted areas. 

2. You are a finalist in the Mrs Globe South Africa Pageant – congratulations! What prompted you to enter Mrs Globe SA? Did you always have aspirations to enter a beauty pageant?

Just like every other little girl, I grew up watching princess fairytales and beauty pageants, the likes of Miss SA Miss World and Miss Universe. As a child, my cousins and I would play pretend pageants and choose the countries that we wanted to be. But I never realised at that age how different I was and how non-inclusive and cruel the world around me could be until I was a bit older. I was forced to cover up, not just to protect my skin, but to protect my emotional well-being. It was never an easy task being out in public. People constantly stared and whispered. I always felt like I never quite fitted in. I had so much drive and personality but my body didn’t match up. Growing up I never saw women like me represented anywhere. Not in media, on runways, in movies or pageants, and I became more aware of what society saw as normal, and I realised that it wasn’t me. I was forced to put aside many dreams. My friends would get picked for modelling or fashion shows and no one would even ask me. I would be too ashamed to even tell anyone I wanted to be a model because I knew they’d laugh at me.

I thought my time was over, until I came across the Mrs Globe South Africa call for entry. What attracted me to the pageant was it’s non-discriminatory entry criteria. Unlike other “Mrs” pageants, the only main criteria was that you had to be within a certain age bracket. It didn’t matter if you were divorced, single, married, disabled, had no prior experience, fat, skinny or whatever, the call for entry was broad and inclusive. The pageant promised to be unique and empowering and aimed to give women the opportunity and platform to leave their own legacy. I decided to give it a try. 

3. Do you have prior experience with pageants?

No. I have no prior pageant or modelling experience.

4. What is your main purpose for taking on a platform like Mrs Globe SA?

I wanted a platform where I can be allowed to share my journey of being isolated and rejected, and then coming into my own, and finding the courage to step out in boldness and confidence, to make my dreams a reality despite my physical limitations. I wish to bring Hope to other women and young girls living with a disabling illness or condition, to be someone that they can look up to and say, if she can be so brave and confident, then I can too. The stereotypes and the scewed ideas of what inclusion, representation and diversity really are, has to be challenged further because the current media platforms and big brands act as if those of us with disabling chronic conditions, don’t exist. We still aren’t being adequately represented but we too are consumers of beauty, fashion, food and lifestyle products. This is why I’ve entered the social media space as a disabled micro-influencer and an advocate for body-positivity and inclusion. Women should be able to embrace the bodies they are in, without the fear of what society finds acceptable.

5.  What have been some challenges of being a beauty pageant contestant? How will your care routine be impacted as you go forward with the pageant?

The biggest challenge has been the time crunch, the pageant run up has been just 3 months long which is very short in pageantry terms. The finale takes place on Nov 12, 2022  . As a contestant there are several obligations that you undertake to commit to, like fundraising, promoting the pageant sponsors, attending coaching, workshops and events so there is a lot of planning and time involved. In my case, I lose precious time because my care routine is so intensive or when I have an eye episode, for example. With our Johannesburg weather being so dry at the moment, my eyes have taken quite a knock and my abrasions have been more frequent, 3-4 times a week. That’s a lot of down time and makes planning to fulfill my commitments difficult. My daily bath, wound care and bandage routine takes up to 4 hours a day, every single day. Most days I go to bed around 2am as I try to get my self-care routine as well as any pageant work done when the kids have gone to bed. There’s a lot of self-PR involved and that’s time consuming too. If we have an early morning workshop, I have to wake up very early to ensure that I get my wounds taken care of for the day, before I can even put on clothes, do my hair or make up. From a physical point of view, it’s involved a lot of time on my feet, and standing is quite painful for me. Many people with EB make use of wheelchairs because walking and standing is difficult. I’ve had to plan my outfits according to what my skin will tolerate, which has also been a challenge because there is no saying where I could end up having wounds on any particular day that would need a bandage or a dressing to be placed over, so I usually have to plan an extra outfit. I have to ensure that my garments are adequately lined, and that the fabric is safe and comfortable for my skin. I opt for darker colours and thicker fabrics in case of wounds bleeding through, so wearing white for example is not preferable for me. I also have to plan my hair and jewellery accordingly, anything too heavy on my ears or neck will cause wounds. I had to let our pageant coaches know early on that I am unable to wear heels or open shoes, because my feet are always wrapped in bandages to protect them. So unlike the other contestants, I would have to wear boots with my dresses and swimwear. I was very nervous about the swimwear and ballgown segment but our designers have been very accommodating in ensuring I’ll be comfortable on stage. A lot of planning and thought goes into it, but something I always say to myself, is to try everything, try my best, make it look seamless and deal with the pain later. I carry pain medication and my wound care kit with me everywhere I go in case I need to patch up. With all its challenges, this journey has been a very enlightening and exciting one, and I continue to push myself and push through the challenges. 

6. What has been the reaction of your fellow contestants to your EB?

We haven’t had a significant amount of time together as contestants but so far they’ve been kind. When we first met, the girls weren’t really sure if they could approach me and ask questions so I had to take a very proactive role and I’d approach people and introduce myself to open up that conversation, because it’s not only about them getting to know me, I also want to teach them about EB. I'm sure many of them didn’t really understand when I’d said I couldn’t wear heels for example, but now they have a better idea of why. It’s never easy entering into a space where you stand out like a sore thumb for all the wrong reasons, but I am so passionate about breaking stigmas and normalising differences, especially in spaces that are usually unforgiving to any imperfections like the beauty and fashion industry. 

7. Have you met others with EB?

There are a few of us in South Africa that I have met personally and others I’ve met in the online platforms. It’s always lovely whenever we get a chance to meet whether online or in person, because you know you are talking to people who get you and what you go through. It’s a different kind of bond we all share but a beautiful one nonetheless. 

8. What are your hobbies?

I used to love to dance, but the older I got the more challenging that became and I stopped. My back, hips and knees are very weak. I have osteoporosis. There isn’t much else I have time for these days to be honest.

9. What brings you hope or joy when you're having a bad day?

My kids, my hubby and my family in general - but mostly my kids - fill my heart with the most amount of contentment, they are truly my pride and joy. There is no other love than the love of being unconditionally loved and adored by little humans you created. They are my reason to keep fighting.

10. What message would you like to share with those who are impacted by EB?

Don’t give up on your dreams. Whether it’s physically possible to achieve or not, I believe that dreams keep our hopes alive, and as long as there is hope, there is a chance to one day see a cure come to life. Don’t compare yourself with others, including people in the EB Community. Our challenges are all very different, that only we face, and only we truly understand our pain. Be kind to yourself and your loved ones... it's by no fault of our own that were born like this, and at times it can be easy to direct anger to those who love us the most, because we know that no matter what, tomorrow they’ll still be here... unlike other people who may have walked away... so remember to be kind. Pain makes me grumpy, I have to remind myself to be kind too! And lastly, believe in a higher power, whoever it is that you may pray to, pray and seek God. He strengthens our minds so that even when our bodies fail us, our minds remain focused and strong. 

11. What message would you like to share with those who don’t have EB?

Never judge a book by its cover! The strength and resilience of those of us who live with disabling conditions is incredible. When given the right platform and opportunities, we can prove much! The Mrs Globe stage for example, is so much more that just another beauty pageant for me, it's a chance to be uniquely empowering and inspiring. I believe that I have the passion to be the embodiment of change in an industry that is so dominated by unrealistic beauty standards. We as women are so much more than outer appearances or esteemed job titles. In a world that is driving the independent women boss babe directive, there are those of us who can’t measure up to those standards because our circumstances don’t permit it. I want the lady at the corner shop or the chronically ill stay-at-home mom to be able to see the beauty and the value in what she does. As someone who was made to feel weak and less than, I want to lead a legacy of change that shines as a strength of character, charisma and fearlessness to help empower other women. 

You can follow Shirvani's pageant journey on her Instagram and TikTok at @that.fragile.skin.mom

Thank you, Shirvani, for sharing your story! You can connect with Shirvani by sending her a message on here profile here.

If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!