Living Rare
Patient Stories
Toni Roberts

Living Rare

A peek into life with tissue-like skin

Hello, hi there, my name is Toni and I’m a 27-year-old female living in Cape Town, South Africa.

I am a counsellor, a daughter, an avid traveler, an honours student, a friend, a Christian, and, oh, I also live with epidermolysis bullosa. Epidermolysis bullosa, or EB for short, is a rare skin condition which results in extremely fragile skin, shearing off or blistering from any slight friction. Unfortunately, there is still no cure. There are four different types of EB and each type has a range of complications. Some complications include anemia, difficulty eating, high pain levels, heart complications, dental issues, hair loss, compromised mobility and skin cancer to name a few.

Growing up with EB wasn’t an easy task. Just showing up for school, walking from class to class and lugging all my books seemed like a mountain of effort and pain each and every day. Most afternoons I would spend hours fixing and patching up all the damage the day had caused. This included bath soaks, lancing all blisters, applying all the creams and potions before bandaging up in protection for the next day of rough and tumble. Making friends or trying to fit in, when you look quite different from the rest of the pack was also quite the challenge. Living with a rare skin condition in general affects every single facet of one’s life. EB is obviously a largely physical condition, but increasingly affects us mentally, emotionally, spiritually, financially and socially. As I’ve gotten older, I worry much less about being chosen as an oral presentation partner and more about the financial strain of such a needy condition. I worry about what my later years in life might look like, as I watch my body handle less and less. And I worry about bringing children into the world and what capacity I might have in being an all-round mother, to name a few.

Living rare means constantly having to explain who I am and what I’m capable of to almost every person I meet. It means repeating “I have Epidermolysis Bullosa, but you can call it EB for short” to the gentleman at the post office, to the HR lady interviewing me for a job and even to most medical physicians I’ve come into contact with. While being rare can sometimes make me feel isolated or alienated, it has also given me a sense of great pride. Pride in the fact that I’ve accomplished many great achievements, despite living with a highly debilitating condition. Some of which include traveling to many corners of the world, sharing insights with large rooms of people and completing the Cape Town Cycle Tour, which is 109km (68 miles) on a bicycle, for fun!

There is an African proverb which says ‘It takes a village to raise a child’ and this is very true in my case, I’ve always had my team. My team of warrior friends who I’ll have for life and my team of fierce family members, both of which could stare down any sucker staring at me on public transport or in the supermarket line. These teams have encouraged me on days when I’ve felt defeated and have cheered me on when I bring up the next crazy idea on my trusty old bucket list. I was raised to believe that my life was not a mistake, that I have a purpose on this earth and that I can achieve it with hard effort and dedication. This is a really important mindset for anyone living with a physical or mental condition. Life can be extremely lemony sometimes, but EB has also taught me be to be empathetic, to be appreciative, to be able to sit with people in their darkest times and to truly seek the important things in life.

It’s important to look at challenges and use them to grow and to educate. With 27 years of expert blister popping, cream applying and pain management skills, I spend a lot of my free time helping South African families on their journeys with EB. A great team and I started a patient-based organisation to assist with connecting families to knowledgeable physicians, searching for correct wound care supplies or simply just lending an ear during difficult times. This initiative often has us traveling to summits, seminars, conferences and congresses, where we meet people from all walks of life, sharing their experiences and paying it forward. EB may be rare, but boy are there a lot of resources, support groups, websites and ambassadors ready to help you better understand us and what it’s like being differently-abled. Next time you go out into the world, say hi to the person in the wheelchair instead of staring, chances are they’ve lived a big life already and could teach you a thing or two about kindness or even how to tie an elbow bandage using just your mouth, in case you were needing that important life skill.

Toni Roberts is a South African woman living with epidermolysis bullosa. She has dedicated her life to helping others living with the same rare condition