For this year's Rare Disease Day 2025 campaign, we invited Members and their patients to share their personal experiences of living with a rare dermatological condition. The responses we received were truly inspiring, filled with bravery, perseverance, and hope. Here are their stories:
I have trained myself to be a strong woman, and have created an association to raise awareness among albino women and girls about the risks associated with albinism. Although, it is true that I still suffer from skin problems."
"I am a person with albinism. So far, I am the only one in my family, so my skin and hair have always been the center of attention. When I was a child, I suffered frequent sunburns. My mother and I didn’t know exactly how I should take care of my skin in the sun, nor that I needed to use sunscreen constantly (I only used it when we went on vacation, since it was also expensive). As a result, on a couple of occasions, I developed second-degree burns. Over time and through experience, I learned how to properly care for my skin, and today I keep it healthy.
In addition, because of my condition, throughout my life I have received all kinds of comments—from the sweetest and funniest ones, such as: “You look like a doll,” “Are those your legs? I thought you were wearing stockings!”, “You’re the daughter of the moon,” “I’m sure you’re from another planet,” “You’re good luck,” “I thought people with albinism were part of mythology until I met you”—and some have even asked me to give them my blessing…
To the most discourteous ones, such as: “If I were you, I would dye my hair and wear makeup to look normal,” “Be grateful that I didn’t take your condition into account and allowed you to be hired,” “I don’t want you to assist me” (a customer at a store where I worked), “I’m not going to buy those products because I don’t want to look as ugly as you” (a customer at a store where we sold hair products).
Some people have even pulled my hair while I was walking down the street. On social media, I have received hateful messages from people I don’t even know, simply because they saw one of my photos… And the list could go on…
I must admit that on more than one occasion, those experiences made me feel very sad and frustrated. However, having albinism has also led me to live wonderful experiences and to find in modeling an excellent way to show myself just as I am and to express through photographs how beautiful diversity truly is. I learned to use my personal image to break paradigms and to project beauty, authenticity, and the value and beauty of being different."
For many, it affects confidence from a young age. Children may experience bullying. Adults may feel self-conscious in social or professional settings. The physical symptoms can be painful or uncomfortable, but the emotional impact of feeling different can be just as heavy.
Living in our skin requires resilience. It means learning to stand tall in a world that does not always understand rare conditions. But it also builds strength, empathy, and a deep sense of community."
"Living with albinism in Africa is not easy; first, I can't freely do my activities or choose to exercise my passions because of the sun that bothers my skin and eyes—I am always threatened by skin cancer."
"To live in my skin will always be raw and rare. It’s going through a lot of physical pain, 24/7, always having to rethink every moment not to put your skin through more physical trauma. Not to mention the emotional trauma, the mental trauma, and society that just doesn’t get this rare disease with all of the holistic care we actually need."
In Dystrophic EB, the layers of skin don’t anchor properly. Friction isn’t just uncomfortable - it shifts the skin causing blistering and open wounds like burns. A seam in clothing, a lwalk, even gentle pressure can cause blistering and wounds. But the deeper story isn’t just about blisters. It’s about scarring. It’s about skin that heals by tightening, by shrinking, by changing shape over time.
My body doesn’t simply heal - it contracts. I have lost my fingers and toes to contractual (mitten) deformities, limiting my function significantly and requiring repeated surgeries that take months to heal, only for the skin to contract and fuse again. Every six months, I undergo oesophageal dilations. It’s routine, in the clinical sense. In reality, it’s deeply personal and physically demanding. These procedures aren’t cosmetic or optional; they are necessary to maintain function, to prevent further narrowing, to preserve quality of life. Recovery means pain, vulnerability, and recalibrating my strength all over again.
I am not a child with EB. I am a woman. A mother. A wife. And living with a severe type at my age carries its own complexity. There are expectations placed on women — about appearance, stamina, availability. My skin does not cooperate with those expectations.
Motherhood with Dystrophic EB requires creativity, constant body awareness, planning and support. There are days when I am managing wounds while preparing dinner after getting home from the hospital, whilst unable to eat myself.
Days when I am healing from surgery while still showing up emotionally for my family.
Days when I am exhausted from chronic discomfort, which affects my moods and temperent, changing the atmosphere in my home.
There is also the invisible weight — planning around heat, friction, walking distances, recovery times. Considering how long I can stand. How much I can carry. How quickly I can eat. Even something as simple as sleep positioning and taking baths becomes strategic.
But living in my skin has also shaped me in ways I would never have chosen, yet deeply value.
It has made me disciplined.
It has made me intentional.
It has made me profoundly aware - especially to my children when they struggle with their own big emotions. I understand what it means to feel overwhelmed in your own body but struggle to empathise as I constantly live in survival mode, bracing for the next impact.
Dystrophic EB is rare. It is severe. It is lifelong.
But so am I.
My skin tells a story of fragility, yes.
But it also tells a story of survival, of adaptation, of resilience that is not loud, but steady.
On Rare Disease Day, I share what it is like to live in my skin not for sympathy, but for visibility. To bringing awareness of the disabilities and challenges a skin condition caused, because often times things related to the skin are downplayed. This disease is fatal and I very blessed to still be alive, but not one day is without pain and exhaustion - physically, mentally and emotionally.
Rare does not mean alone. And fragile does not mean weak."