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 in my skin, especially with vitiligo, feels like a constant balancing act between acceptance and the pressure to hide parts of myself. Looking back, even 2, 10, or 20 years ago, I would often dream of waking up one day to find my skin uniform, without the patches of vitiligo that make me feel different. I longed for that sense of normalcy, but over time, those dreams faded, and I’ve learned to focus on living with my condition. It’s a part of who I am now.
But that doesn’t mean it’s easy. Every day, I face the challenge of dealing with the stares and reactions of people, especially at work. The idea of walking into a room full of people, many of whom might notice my condition, can be daunting. To cope, I put on a camouflaging cream every morning, a process that takes me 45 minutes to an hour. By the time I finish, my room is a mess, with cream smudges everywhere. It’s frustrating, but it's something I feel I need to do to face the world confidently.
While I try to cover up the patches on my face, I’ve learned to embrace the vitiligo on my hands. I don’t apply anything to them, and I simply brace myself for the curious stares. Still, I can’t shake the worry that one day I might wake up and find my entire body covered in white patches. The uncertainty about how far it will spread sometimes weighs heavily on my mind, and the fear of developing other autoimmune diseases adds another layer of anxiety.
Living with vitiligo also impacts my wardrobe choices. I find myself overspending on clothes that help conceal the patches, not necessarily because I like them, but because they hide my skin. It’s a constant struggle, balancing my desire for personal expression with the need to feel covered and “normal.”
Despite these challenges, this journey hasn’t been without its highs. I’ve been fortunate to have supportive friends who help me navigate the ups and downs. It’s not always easy, and there are days when I feel overwhelmed by the constant struggle of living with vitiligo. But through it all, the desire to live fully and embrace life outweighs the hardships. It’s a difficult path, but it’s mine, and I’ve learned to accept that."
- James, Kenya, Vitiligo
"Some days, every step is painful, but some days are mild, and my life very ‘normal’. Everyday I have to be very careful with how many steps I take and what I spend those steps on so I don’t miss the things that are important. However, despite carefully planning and saving steps, there are days when the pain makes me miss what is important. It is difficult living with a condition that is unpredictable, hard to explain, and hard for others to understand."
- Eliza, Canada, Pachyonychia Congenital
"Living in my skin has been a journey of learning, acceptance, and empowerment. I have a rare condition called Giant Congenital Melanocytic Nevus, which means I was born with a giant birthmark that covers part of my body, along with hundreds of smaller ones and many scars. Growing up with different skin wasn’t always easy—there were stares, questions, and misconceptions.
I often say that animals are born with unique patterns on their skin—like a tiger’s stripes or a leopard’s spots—while humans are born as blank canvases. Maybe that’s why so many people get tattoos, to express who they are. But I was born with my own natural pattern, my own “animal print,” and that has become my greatest source of empowerment. My birthmarks look like a universe scattered across my skin, and my scars form a web—like a spider's intricate work—telling the story of everything I’ve endured.
It’s taken me a long time to see my skin this way. I had to learn to see myself through my own eyes, not through the eyes of others. Growing up like this, I didn’t have much choice but to learn acceptance. When you’re born different, you can either hide or embrace it—and I chose to live. I want to go to the beach, to enjoy life, and to move forward. That’s what acceptance has meant for me: embracing what I have and looking toward the future.
Of course, there are practical challenges too. I have to protect my skin from the sun more than most people because of the risks involved. And physically, living in my skin is unique: for example, in areas where I have the nevus, there are no sweat glands, so I don’t sweat there. The scars from my surgeries are like chapters written on my skin, each one a reminder of what I’ve overcome.
What I once saw as a barrier, I now see as a bridge: my skin has allowed me to connect with others, raise awareness, and amplify the voices of people with rare diseases.
So, what is it like to live in my skin? It’s unique, challenging, and above all, powerful. My skin isn’t an obstacle—it’s my universe, my web of strength, and my way of showing the world that being different is also beautiful. And I’m proud of it."
- Alba, Spain, Giant Congenital Melanocytic Nevus
"Some days are harder than others, I have mobility problems as well as a brain tumour and multiple other issues. I can struggle with confidence and making friends. I don’t let it stop me from the things I love most of the time like card making, baking and raising money for the charity that helps me."
- Lily, England, Neurofibromatosis
"From my perspective, living with vitiligo and losing over 90% of my color has been an incredibly profound and transformative experience. It’s not just about the physical changes—it’s about the emotional, social, and mental journey that comes with it.
At first, it felt like a loss, like a part of my identity was slipping away as the pigment disappeared. I often found myself grappling with questions: "Who am I now?" and "How will the world see me?" The stares, the whispers, and the endless questions from strangers could be overwhelming, even hurtful at times. There were moments when I felt exposed and vulnerable, as though I had no choice but to confront the world with this part of myself that I was still learning to accept.
But over time, I realized that this journey was not about losing anything—it was about discovering something much deeper. Losing my color pushed me to find strength within myself and to see beauty beyond what society defines. It forced me to embrace vulnerability, to stand tall even when I felt different, and to love myself in ways I never imagined.
I’ve learned that my skin tells a story—a story of resilience, self-acceptance, and advocacy. Yes, there are days when the journey is hard, when the weight of being different feels heavier, but those moments are outshined by the light of connection and purpose. I’ve founded and launched a community where individuals understand, uplift each other, and celebrate the beauty in being beautifully unblemished.
Living with vitiligo has shaped who I am—an advocate, a voice, and a symbol of strength for those who might be struggling. My skin may look different, but it reflects the powerful truth that beauty comes from within, and every mark, every patch, is a testament to the courage it takes to love yourself completely."
- Tonja, USA, Vitiligo
"I have vitiligo and I started getting white spots on my skin about 5 years ago. At first, we didn't know what it was but eventually got a diagnosis when the white patches were more widespread and had grown to be more visible. It was confusing and I have been worried about my appearance and what will happen in the future.
My skin has changed over the years and some of my white patches have grown while other spots have repigmented. I was younger when I got my diagnosis and most of the time my skin condition has made me feel proud and unique. At other times, I feel like I have unwanted attention, stares, and questioning looks. I have been bullied at school by classmates who think they're making funny comments but those words can be very hurtful. I have been stared at by adults and those times in public can be uncomfortable. I have tried to learn to not let those things bother me and have found an amazing local support group (Beautifully Unblemished Vitiligo Support Group).
It is so great to know so many other people who have the same condition and have gone through what I have. Vitiligo can be beautiful but for many it is hard to deal with mentally, especially if they are diagnosed at an older age. I hope to bring more awareness to this skin condition to help people have understanding and acceptance for those people living with vitiligo."
- Ava, USA, Vitiligo
"When everyone around you is enjoying the sun, I have to cover my self to go outside to prevent having a flare. When having a flare, people stare at me with disgust, avoid me, or just simply stare (due to the way I dress or look during sunny days). Not only my skin is affected, my whole body is affected, also psychological and musculoskeletal. I am not my skin, I am me, I am still a person who wants to live like "normal" people do."
- Annemarie, The Netherlands, Subacute Cutaneous Lupus Erythematosus
"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."
- Laila, South Africa, Pustular Psoriasis
"Living with Ichthyosis can sometimes be very hard. But I always remind myself that it's my life! Try to get everything you can out of it. Because no one else lives your life, so enjoy and do the things that make you happy! Even if that means living with Ichthyosis for a lifetime..."
- Silvana, The Netherlands, Ichthyosis Hystrix with Confetti
"Living with Neurofibromatosis Type 1 (NF1) has shaped so much of who I am, but it hasn’t always been easy. From a young age, I became aware that I looked different, and that difference made me a target. I was bullied—for my skin, for the way NF1 affected me, for simply being me.
Every day, I live with the fear of being rejected by other people. Will they judge me for my appearance? Will they see past my condition to the person I really am? Even now, those worries never fully go away. I try to remind myself that the people who matter will accept me, but that fear of being seen as "too different" is always in the back of my mind.
Then there’s the uncertainty—the knowledge that NF1 is degenerative that it could change in ways I can’t control. I don’t know what the future holds for my health, and that’s terrifying. Will the neurofibromas grow more? Will new complications arise? Will it get worse? That constant worry is something I have to carry with me.
Despite all this, I’ve found strength. Being part of Childhood Tumour Trust has helped me turn my pain into purpose. I fight for awareness, for support, for a world where no one with NF1 feels alone. I still have hard days, but I remind myself that I am more than my condition. I am Jodie —strong, resilient, and determined to make a difference."
- Jodi, England, Neurofibromatosis Type 1
"Everybody knows me as a smiling and happy person. I work voluntary, as a patient representative for ichthyosis and other skin diseases. I am one of the founders of the Skin at School teaching materials for primary schools and I am EPag for European Reference Network Skin.
As a child I experienced social unsafety because of my condition. I think that education can learn children that every child can have a problem with his or her skin, and that it is no reason for exclusion. As a grown up, my skin still itches a lot and can be very painful. I have recurring infections.
I don't earn money by working as a patient representatives, but I pay a bill for my work. I often try to disconnect from the pain, so I can focus on the challenges that come with my position. I hope that by our work we can make inclusion and treatment possible for everybody!"
- Jodi, England, Netherton syndrome
"Living with vitiligo for 18 years now has not been easy for me, it was really something challenging to my life. I lost my marriage, was discriminated, stigmatized, lost self esteem, couldn't go to public places because of fear. Others said I have HIV, I aborted twins, I was burnt by twins, I went to the witches and things turned against me, so I felt as if it was end of the world because I had no idea about the condition.
I tried medical treatments they tested blood and all was negative, then tried herbal treatments and didn't work for me also until I got counselled and met people of same condition and formed an organization that helped me out of stigma. Am now living happily because I accepted what I am and I am now a voice of the voiceless."
- Mukatushabira, Uganda, Vitiligo
"Living with Scleroderma can be a deeply challenging and complex experience, as it affects both the body and the mind. Scleroderma is an autoimmune disease where the body’s immune system mistakenly attacks its own tissues, leading to the hardening and scarring (fibrosis) of skin and internal organs. The symptoms can vary greatly from person to person, but often involve skin tightness, joint pain, digestive issues, and fatigue. In more severe cases, it can affect organs like the heart, lungs, and kidneys.
For many people, the physical symptoms of Scleroderma can alter how they experience their own body. Skin may feel tight or hard, sometimes limiting movement or making it difficult to carry out everyday tasks. The change in appearance can also have an emotional and psychological impact, particularly if the condition causes visible changes in the skin or face.
The unpredictability of flare-ups can add another layer of complexity. People with Scleroderma may feel fine one day and then experience a worsening of symptoms the next. Managing the condition often requires a balance of treatments, lifestyle changes, and emotional resilience.
That said, people living with Scleroderma also find ways to adapt. Support from loved ones and healthcare teams can make a huge difference."
- Rowena, Philippines, Scleroderma
"Living with vitiligo has made me experience a mix of challenges and opportunities, initially when I got diagnosed with vitiligo I experienced shock and anxiety but later I embraced my condition as a unique aspect of my identity. I found empowerment through the ongoing advocacy and community support and through this I managed to transform the perceived setbacks into opportunities to challenge conventional beauty standards and promote acceptance and diversity through my modelling career and advocacy programs."
- Phelix, Kenya, Vitiligo
"PAIN. That single word describes my life. PAIN in my feet. PAIN in my hands. PAIN in my Fingers. PAIN in the skin around my waist and more PAIN from the time I wake up to the time I fall asleep. Never a break. The weight of knowing that this has been and will be my life until the day I die. PAIN."
- Richard, USA, Pachyonychia congenita K6a
"Living with Ichthyosis is mentally, emotionally and physically exhausting! The sight of my skin falling everywhere is depressing and cleaning up takes up more of my time and energy!
Going places is worrying for me too. I would constantly worried about people judging me when they see me by my skin, and not the person I am.
Ichthyosis has put me in a extremely complicated position where it's hard to get a job, people turning their back on me, and only making my depression worse!
Thankly, Ichthyosis is not contagious..I am a single mother to a healthy teen son and he is doing way better than me, his mom!
I would like to have another healthy baby, if possible, and more happier years, God willing! And I hope people would accept me as I am, when they read my story, and not judge me by my skin.
God bless!"
- Ana Maria, Samoa, Ichthyosis
"Tenho 54 anos e nasci com uma mutação espontânea no DNA no gene K16 que dá grandes calosidades doloridas nos pés, dificultando minha mobilidade. Somente aos 44 anos descobri o que realmente tinha através de uma projeto dos EUA. Até então não conhecia ninguém com minha condição e até então tinha dificuldade de ter um diagnóstico com os dermatologistas. Sofro imensamente com a dor nos pés que irradiam para as pernas e coluna, muitas vezes me desanimando de sair e sendo necessário usar medicamentos para meu deslocamento. Agradeço aos médicos que pesquisam e buscavam suporte na ciência para melhorar nossa qualidade de vida. Muitas vezes até nossos familiares não entendem nossa dor!"
- Raquel, Brazil, Paquioniquia Congênita (PC)
"It feels painful and exhausting. It is like every step I take is on hot coals, but the burning doesn’t stop when I stop walking. I have to plan and calculate everything I do, every single day, to try avoid more walking, and pain, than I can handle."
- Lorraine, Ireland, Pachyonychia Congenita
"Living with psoriasis has been a journey of resilience, adaptation, and advocacy. As a 10x productive chronic patient, I have learned to navigate the complexities of managing a long-term skin condition while pursuing academic excellence, maintaining a fulfilling career, and actively contributing to patient advocacy.
Singapore has provided me with access to advanced therapies, which have significantly improved my quality of life. Yet, I know that many people, especially in underserved regions, still struggle with delayed diagnoses, lack of treatment options, and societal stigma.
To enhance my patient advocacy journey, I have pursued further education in areas that strengthen my ability to contribute to healthcare policies, patient rights, and global health systems. I recently completed my Master’s degree in Health Economics, Management, and Policies with the University of Newcastle, which has deepened my understanding of healthcare systems and economic models that influence patient access to treatment.
Currently, I am advancing my expertise in international law by pursuing an LLM Master’s degree in International Law in the UK, with a particular passion for International Human Rights and International Environmental Law. These disciplines are essential in shaping policies that protect the rights of patients worldwide and address the environmental determinants of health.
I am also delighted to have been accepted to pursue my Doctorate of Business Administration (Health) at University College London (UCL). This programme will allow me to further my progressive discovery in patient advocacy, healthcare leadership, and policy development, equipping me with the knowledge and skills to contribute to evidence-based solutions for patient empowerment, healthcare access, and regulatory frameworks.
Beyond my personal journey, I have had the privilege of serving as an Advisory Board Member of the World Patients Alliance (WPA). This role enables me to actively engage in patient advocacy at local, regional, and international levels, ensuring that patient voices are heard, respected, and integrated into healthcare policies and decision-making. I am involved in various initiatives that focus on patient engagement, access to treatment, and strengthening global healthcare systems.
Additionally, I work as an Associate Lecturer with various international universities across the United Kingdom, the United States, Australia, and Singapore. I have been deployed to teach in the Asia Pacific and Central Asia regions, where I have had the invaluable opportunity to immerse myself in diverse global cultures and business practices. This experience has greatly enhanced my understanding of cross-cultural negotiations, healthcare systems, and policymaking, further complementing my work in patient advocacy and global health discussions.
Furthermore, I am currently part of the 8th intake of the EUPATI Patient Expert Training Programme (2024 - 2025), a prestigious initiative that equips patient advocates with in-depth knowledge of the medicines research and development process, regulatory pathways, and patient engagement in healthcare decision-making.
Rare Disease Day 2025 serves as a crucial platform to raise awareness about rare dermatological conditions and the challenges faced by patients worldwide. By sharing my story, I hope to inspire others to embrace their journey, seek the care they deserve, and contribute to a more inclusive and patient-centric healthcare system. I firmly believe that patient voices must be at the forefront of healthcare transformation, and I remain committed to advocating for a future where no patient is left behind.
To all my fellow chronic patients, remember: your condition does not define your potential. With knowledge, resilience, and advocacy, we can shape a better world for all patients!"
- Edmund, Singapore, Psoriasis