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:
"Living with Epidermodysplasia Verruciformis (Tree Man Syndrome) is extremely challenging for me. The thick, bark-like growths on my hands, feet, aAjith Prasanna Kannangarand other sun-exposed areas make even simple daily activities—like eating, writing, bathing, or holding objects—very difficult. The constant pain, discomfort, and repeated infections affect both my physical and mental well-being. Because of the unusual appearance of my skin, I often face social stigma, isolation, and emotional distress. As a young person, it is heartbreaking to feel limited in my education, work, and social life. I need continuous medical care, support, and understanding to manage this rare and life-altering condition."
- Ajith Prasanna Kannangara, President of Skin SriLanka
"I am Carine Houngue, a young albino woman born in a family of four children we were 2 albino girls. I lost my older sister a few years ago following skin cancer caused by albinism. Since I also have skin lesions that I operate on every 2 years, I am at the risk of not letting it degenerate.
Since childhood I felt different from the others at school; the students made fun of me and pricked me with a needle to see if I could bleed. People in the street shouted a song in the heart when they saw me pass. In my youth men flirted with me just out of curiosity or to take my hair or my pubic hair at ritual purposes.
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 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."
- Carine Houngue, Albi International
"My skin feels unique, whether it's the marks I have chosen to tattoo on my body or the vascular malformations; I am proud of the stories my marks tell, however, that doesn't mean the pain that flares up or the interactions it causes aren't exhausting."
- Katie Allen, CMTC-OVM
"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. ?"
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. ?"
- Tesa Aguilera, Fundación Piel de Luna
"Living with neurofibromatosis means living in skin that is often noticed before you are. The marks and tumours are visible, and with that visibility can come staring, questions, and misunderstanding.
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."
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."
- Fergal Griffin, Neurofibromatosis Association of Ireland (NF Ireland)
"Living with neurofibromatosis means living in skin that is often noticed before you are. The marks and tumours are visible, and with that visibility can come staring, questions, and misunderstanding.
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."
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."
- Fergal Griffin, Neurofibromatosis Association of Ireland (NF Ireland)
"Living with albinism in Africa is not easy; first I can't freely do my activities nor choose to exercise my passions because of the sun that bothers me - my skin and eyes - I am always threatened by skin cancer."
- Houngue Carine, Albi international
"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."
- Dané Stephanie Rossouw, Debra South Africa
"It is extremely difficult to live with pustular psoriasis as I got flares throughout my entire body from scalp right down to my toes. These flares are pus filled pimples which are very painful that blankets over my body. There were days I couldn't shower on my own or use the toilet on my own, other days were better. Id flare up in the palm of my hands and under my feet as well as under my arms which prevented me from doing basic day to day tasks. I would have a fever most of the time and be forced to wet wrap my entire body in steroid creams. This would help heal my skin and take the pain away but the healing process involved itching skin that would drive any human crazy. Once it healed the process started all over again with pus filled pimples.
I also took many types of medication that had a number of different side effects. Some of the more difficult side effects were weight gain, hair growth(facial hair and I am a female lol), hair loss( hair of head), skin thinning(lots of large stretch marks), teeth sensitivity, vision problems, trembling and shaking, weak knees etc.
My flare ups would last about 2 weeks and would come back within a week so it would come and go every month until I started using a biologic that kept my flare ups at bay Alhumdulilah ( praise to God). I eventually went off all other medication and only stuck with the biologic which has minimal side effects. I have been relatively healthy for 3 years only struggling with scalp and some other spots.
The biggest problem I am facing at the moment is that I would love to have children (I am 30) and I would have to go off my biologic to conceive and risk flare ups while pregnant. I am not willing to go back to my struggling past for a baby but I pray everyday for a miracle and I humbly request the reader to too pray for the health of everyone with skin conditions and all other health conditions. May God cure us such a cure that it's as if its never been there in the first place. Ameen.Living in my skin means living with Dystrophic EB - a rare genetic disease that makes my skin as fragile as tissue paper and my scars as permanent as ink.
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."
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."
- Shirvani Naran, Debra South Africa
"We have just started sharing videos on our YouTube channel starring 3 patients with EB. Please check them out here, to learn about their unique experiences. (Dutch spoken with French subtitles)."
- Ingrid Jageneau, Debra Belgium