ASHLEY EAKIN ON DISABILITY, BEAUTY AND STORYTELLING: WHY HER VOICE MATTERS

© Ashely Eakin / Offcial Website of Ashley Eakin

It was 2018 when I was searching for personalities who are inspiring in a very special way. By chance, and without specifically looking for anything, I came across a video on the SoulPancake platform. On the screen, I see a woman saying the following sentence:

I am just a human and one day this body is gonna be gone.

Ashley Eakin, Filmmaker

It is Ashley Eakin who articulates these sentence. The video is a feature. A video that gives extraordinary people the opportunity to be seen. The company itself advertises with the following sentences: “The Interweb’s GOAT source for uplifting videos about what it means to be human.” At SoulPancake, the focus is on people – people who are real, unfiltered and have a story to tell.

I have decided to publish this interview as a modern 2026 feature, and not as a simple Q&A blog post – so, the interview with Ms. Eakin is a narrative, reflective blog piece that reintroduces my conversation with Ms. Eakin in a way that feels current, layered and culturally relevant. Enjoy!


THE MIRROR MOMENT

Ashley was born with a rare combination of Ollier’s Disease and Maffucci Syndrome – a non-genetic condition that affects bone growth and can lead to tumors, surgeries, and lifelong medical challenges. By 2018 when our interview took place, she had undergone +25 surgeries and survived ovarian cancer twice.

This facts show that Ashley had gone through difficult times. I still remember the medical complexity as well as something else.
She desribed walking through her life feeling “normal” – until she caught her reflection in a mirror. She says:

So, growing up I think I really tried to push the disease aside and almost ignore it. But as I matured and was able to process my disease, I have realized it has infiltrated every aspect of my life. In both good and bad. Growing up, I used to avoid mirrors because when going about daily life, I would think I had the standard body – like what I see on everyone around me, but then I would catch myself in the mirror or see a photo and remember, OH! I am different and it would almost have this devastating effect. But with each passing year, I have grown to love myself but the most dramatic shift probably happened around 2012, with the most prominent growth happening this past year“.

That moment – the collision between self-perception and external reality might probably be something many of us understand. Whether medically influenced or not, many people might be familiar with “The Mirror Moment”.
The mirror is not only glass anymore.

It is Instagram.
It is TikTok.
It is AI-enhanced perfection.
It is society.

Ashley continues:

Do not get me wrong, although I have had internal struggles with my disease – people who know me would describe me as happy and fun. I have not let my disease hold me back from pursuing my goals and I have had some amazing jobs in TV and Film that have allowed me to travel the world. Aside from a small group of people, most people who know me think I own who I am and this disease, which is true. But it is definitely been a journey to get here. I never in my life thought I would be this open on the internet. Even if you asked me two years ago, I would have never thought I would be this vulnerable.

Ashleys’s realization that “normal” body would not equal a perfect life dismantles one of the most persistent illusions of our time: that appearance determines fulfillment.

Ashley Eakin on SoulPancake – I Survived My Greatest Fear

VULNERABILITY

When Ashley decided to publicly share her story, she called it her “coming out” moment — not in the traditional sense, but in the sense of revealing what had long been hidden.

She wore a dress that showed her scars. She chose not to hide.
“I never thought I would be this vulnerable online,” she told me.

In 2018, vulnerability on the internet felt brave and unusual. But it is people like Ashley who have paved the way.
In 2026, vulnerability is everywhere – That is important. It is necessary.
But there is a difference between curated vulnerability and courageous vulnerability.
Ashley’s story was not aestheticized. It was not monetized trauma. It was a woman deciding, on her own terms, to exist fully — scars included.

That distinction matters.

BEYOND THE BEAUTIFUL FACE

Ashley revealed that some people reduce her appearance to her beautiful face. “It’s weird,” she said. “It’s a compliment. But it feeds into the idea that if I had a ‘normal’ body, my life would be perfect.”

Ms. Eakin opens up an important topic which people with disabilities unfortunately face. That sentence quietly dismantles ableism, perfectionism, and surface-level empowerment narratives all at once.

This is what Ashley’s case reveals :

Beauty can become a mask.
Compliments can become cages.
And assumptions can erase complexity.

That means, in a culture still obsessed with visual capital, Ashley reminds us that a person is not a highlight reel.

CHOOSING MAGIC – EVEN IN PAIN

What I loved during our interview is that Ashley does not romanticize suffering.

She acknowledges her pain. She acknowledges her struggles. She admits that she could focus on the negative — and it would be just as truthful.

But she chooses something else:

I do see a positive purpose. But I really have to focus on that. I could easily focus on the negative and it would be just as truthful. But I think, at the end of the day, you take away what you want. And I choose to live a life where I see magic all around us, even in pain and tragedy. Empathy is one of the most beautiful characteristics of human beings and I get to see that all the time.

Ashley Eakin

That choice is not naïve optimism. It is agency.
In 2026, where cynicism often masquerades as intelligence, choosing empathy can feel like rebellion.

And empathy, as Ashley says, is one of the most beautiful characteristics of human beings.

REPRESNTATION AND STORYTELLING

Ashley never wanted her entire creative identity to revolve around her illness. She wants to direct powerful stories — stories that connect, stories that move people, stories that expand perspectives.

That desire feels even more relevant today, as conversations about disability representation, authentic casting, and inclusive storytelling reshape the film industry.

Her journey is not just about overcoming something.

It is about who gets to tell stories.
Who gets to direct them.
Who gets to be seen.

KINDNESS IS NOT INHERENT – IT IS LEARNED

When I asked Ashley what she would wish for, one of her answers was simple:

“For people to be more kind.”and added something that still echoes today:

Hate and cruelty is not inherent. It is learned.

Ashley Eakin

She added:

SO MANY THINGS! This video went out and I contemplated a documentary, because I love stories and have heard from so many incredible people pouring their souls out. And I thought about going around and meeting these people – but truly, I do not know if I want my creative filmmaking focus to be on my own life. If the opportunity arose, I may chase that – but my main goal is to direct powerful stories that people can connect to. Not only about my own disease. I have directed a few short films and my most recent one I shot in Malaysia this summer. It is called The Details and it is really special to me. I am excited to release it soon!
For my next project, I also have as short film that is inspired by one of my favorite Shel Silverstein poems called Masks. I plan to fundraiser for it and may even include some of the people who have reached out to me through the video. It is going to be a good one!

In an era defined by polarization and digital hostility, that insight feels less like a wish and more like a call to action.

Kindness is not passive.
It is cultural work.

WHY THIS CONVERSATION STILL MATTERS

Looking back at our 2018 conversation, it was never just about illness.

It was about identity.
About visibility.
About the courage to exist without apology.

Ashley taught me that self-confidence is not a destination. It is a practice. A daily decision to focus on what is internal rather than external. To value empathy over aesthetics. Purpose over perfection.
And perhaps that is why this interview feels even more relevant today.
In a world obsessed with being seen, Ashley reminds us that the real work is in being whole.

ABOUT ASHLEY EAKIN:

Name: Ashley Eakin
Born: California
Profession: Filmmaker, Director and Advocate
Known for: Films like Single, Growing Up, Forgive Us Our Trespasses, Survive, Crazy Rich Asians


ALSO WORTH READING:

Ashley’s reflections join a chorus of voices I have previously highlighted — voices like Najwa Zebian’s, Kathy Parker’s and Funmilola Fagbamila’s — women who transform personal experience into collective impact.

NAJWA ZEBIAN: IN A WORLD THAT SILENCES, SHE SPEAKS

© Najwa Zebian/ Facebook

Sometimes, life feels like a roller coaster — full of highs and sudden drops. In moments when we feel overwhelmed and struggle to put our emotions into words, encountering voices like Najwa Zebian can make all the difference.

I still remember the first time I read one of her quotes. Something about her words felt deeply familiar, as if she had captured emotions I could not explain myself. At that time, I was going through a painful heartbreak when I came across this quote:

They do everything to
dim
your light,
and then they ask you why
you’re not shining.

Najwa Zebian, The Nectar of Pain

The more I researched Ms. Zebian’s work, the more I realized that she is far from an ordinary author. I became deeply interested in learning more about her, so I took a chance and sent her an interview request.

To be honest, I didn’t expect her to reply. I assumed she probably receives countless requests from different people, and @abylovesblogging was (and still is) just a hobby of mine.

But sometimes, life surprises us. Najwa actually replied and agreed to be interviewed by me. I could not believe it — I was so happy! Here is the shortended version of our interview from 2017.


1. @abylovesblogging: You wrote two beautiful books – tell us more about the topic of your books ..

Najwa Zebian: My first book, Mind Platter, gives a voice to those who need one, offers a crying shoulder for those who need someone to listen, and inspires those who need a reminder of the power that they have over their lives. Published in the same year, my second book, The Nectar of Pain, is a collection of poetry and prose that the pain of love and loss gave birth to.

2. @abylovesblogging: What was the reason you wanted to write a book? And what or who inspired you to do so?

Najwa Zebian: I never intended to write a book before I published Mind Platter. Those were my daily reflections that I shared with a few people who told me that I needed to compile my work and publish it. I am glad I did. As to my inspiration, it was daily life and reflection.

@abylovesblogging: What is your favoured topic writing about? And why ?

Najwa Zebian: I write quite a bit about silence, but I do not have one specific topic that I favor. I write about silence because it is a universal language that holds so much power.

3. @abylovesblogging: What or who is the main inspiration for you personally ? And why ?

Najwa Zebian: I have many people and things that inspire me. It is hard to pinpoint. I just am a very reflective person. Anything that catches my attention and gets me thinking could be inspirational to me.

4. @abylovesblogging:  When did you decide to become an author or to start writing ?

Najwa Zebian: Writing was a part of my life since I was thirteen. I stopped from the age of 16, when I arrived to Canada, till the age of 23. At 23, I started teaching, and that is when I started writing again as I was inspired by the similarities between my experience coming here and that of my students at the time.

5. @abylovesblogging: What would you like to change in this world if?

Najwa Zebian: Of the many things I aspire to change, I would like to empower others to speak up about what they are going through and to feel that their voices matter. I would like the world to have more empathy and more understanding of vulnerability, belonging and connection.

6. @abylovesblogging: Could you imagine, waking up some day and doing something different than being an author? If yes you what would like to do?

Najwa Zebian: I will always be an author as I have published two books already, but to wake up without writing? No.

7. @abylovesblogging: What exactly do you want to achieve with writing?

Najwa Zebian: I want to give a voice to the silenced souls out there.

ABOUT THE AUTHOR:

Name: Najwa Zebian
Born: 1990, Lebanon
Profession: Author, Speaker, Educator, Poet
Known for: Emotional healing, empowerment, poetry
Notable Books: Mind Platter, Welcome Home, The Nectar of Pain
Focus Topics: Identity, belonging, boundaries, self-love, silence


ALSO WORTH READING:

If you are drawn to stories of healing and resilience, you might also find inspiration in my interview with Kathy Parker, who shares her own journey from pain to healing. Voices matter — whether they speak about healing, the self or challenging society. If you’re interested in another powerful voice, I also interviewed Funmilola Fagbamila, a scholar and activist who plays a leading role in the Black Lives Matter movement. Beyond authors and poets, I also love speaking to people like Holger Birnbräuer, who has successfully climbed the Everest. And let me know who your favourite author is and why in the comments!

MINUSCH AFONSO: FIGHTER, WARRIOR, BREAST CANCER SURVIVOR

Minusch Afonso by © Max Sonnenschein

Imagine you want to spend a nice day by the lake with a friend, enjoying some quality time, and this day later turns out to be fateful. This is what happened to Minusch Afonso in 2021. Minusch Afonso is a journalist, moderator, and host in Bavaria and originally from Angola. I meet Minusch Afonso in April at my apartment in Munich to talk about that fateful day in her life. Even before the interview, I knew this conversation would be special. Not only because of the topic, but because Minusch is one of those people you find immediately likable. Here is the story of a breast cancer survivor, which aims to provide insight into what many cancer patients go through and inspire people not to give up. Thank you Minusch for your time, courage and openness!


1. Tell me about this fateful day? What kind of day was it?

Minusch: I had some discomfort in my lower abdomen that day, so I went to see a gynecologist. I was examined, prescribed medication, and everything seemed fine. I then went to the Isar River with my friend for some food and later went home. At home, I ordered some food, and when the delivery guy arrived, I opened the door. For no apparent reason, I pointed my index finger towards my breast and touched it. Just like that. It made no sense. The spot was not itchy or anything, but I just touched that spot. And then I felt a small lump and thought, “Huh, what is that?” I googled it, and usually, Google brings up really scary things, but in this case, it did not.Then, I watched a video on YouTube about how to properly examine breasts and recognize signs of breast cancer. None of the symptoms described in the video matched what I was experiencing. Sometimes, it mentioned discharge from the nipple or skin that looks like an orange peel, but I did not have any of that. So, I thought, okay, maybe it is nothing. On the other hand, I was wondering if I should go to the gynecologist again the next day, considering I had already been there. Then, I remembered I had a doctor’s appointment in Saarbrücken in two weeks and decided to bring it up then.

@abylovesblogging: Minusch went to her see her doctor and told her about her concerns and the lump she had discovered.

Minusch: I attended the appointment in Saarbrücken and told the doctor that I had felt something in my breast. She assured me it was probably nothing serious but examined the area. Having worked in a breast cancer center for many years, she was quite confident it was not anything to worry about. However, to put my mind at ease, she decided to investigate further. I had another appointment where they numbed my breast and used a long instrument to take samples from the tumor. Afterwards, I was allowed to go home. I felt conflicted and another week passed before I was supposed to call for the results.

@abylovesblogging: As if the situation was not difficult enough, Minusch had to wait for the test results. In the interview, she told me that the waiting was the worst part for her. The next day, her life changed from one day to the next.

Minusch: So, I called the next day, and they told me the result was in, and the doctor would call me later – that is when I knew something was wrong. I waited for 1.5 hours for her to call back. Those 1.5 hours were terrible because I had no idea what was going on. When the doctor called, she told me that, unfortunately, it was not as she initially thought and that the diagnosis was malignant. At that moment, everything stopped for me – I was in shock, genuinely shocked. I thought I was going to die. That was my first thought because there had never been any cancer cases in my family. Not even in my circle of friends. The only things I knew about cancer were from TV.

2. What did you do when you realised you had breast cancer?

Minusch: I called my mom and talked to friends who tried to calm me down. My mom drove from Freiburg to be with me. I really appreciated how calm she was because she usually is not that calm. Her calmness helped me stay calm, and we got through that time together. That evening, my mom and I prayed. Eventually, I went to see my gynecologist with her, and the journey felt like it took forever. In the clinic, we had to wait about 45 minutes, and the assistants looked at me with such pity because I kept going to the bathroom due to my nerves. Finally, a doctor came and said that the gynecologist had asked him to talk to me. [Minusch never saw this gynecologist again, despite repeatedly trying to reach her.] The doctor only asked me what questions I had for him.

I had the feeling as if my soul is leaving my body.

Minusch Afonso

@abylovesblogging: Once it was certain that Minusch had breast cancer, they went to the doctor and underwent examinations. She was referred to the breast centre and had to undergo various examinations such as ultrasounds, blood tests and mammograms.

3. What could have gone better on the way to your chemotherapy?

Minusch: Communication during this phase was not always clear. The thing which was so unfortunate about the doctors was that they never spoke plainly. I did not just have to deal with one doctor but with different ones and each of them said different things. That was a bit difficult.

@abylovesblogging: Although the doctors almost always assured Minusch that she did not need chemotherapy, after the surgery, it was recommended by various experts that she undergo chemotherapy.

Minusch: I took all my documents to this doctor and asked him for help. He took his time—two hours, to be exact. He explained everything to me, step by step. He also told me that I had a good chance of recovery because the tumor had not spread to the lymph nodes. Given that I got cancer at such a young age, he advised me to have a genetic test to understand the origin of the cancer. Additionally, he explained the step of mastectomy and recommended that I undergo chemotherapy anyway because I am so young. I could write to this doctor on WhatsApp if I had any questions, and that is still the case. Even though it took some time for me to trust him, I must say he did a good job.

@abylovesblogging: With her thoughts focussed on the forthcoming chemotherapy, Minusch was unfortunately given more bad news…

Minusch: One day before the chemo, I received the news that I do suffer from a rare genetic defect. My first chemo started on December 20, 2021. Normally, the chemo should last about four months, but since I did not tolerate the chemo well (poor blood values, feeling of fullness, fatigue, nausea, fatigue, and vomiting), it ended up being eight months.

I did not expect that at all

Minusch Afonso
Minusch Afonso by ©  Vera Johannsen

4. Who were you able to count on in particular during this time?

Minusch: My family was there for me and helped me as much as they could. My friends too, of course. Some of them called me via Facetime, spoke to me on the phone and tried to build me up. That was really nice to see.

5. Were you also able to draw positive things from your illness?

Minusch: Yes, very many… I had a lot of time to reflect on myself. I would say that I used to be a people pleaser and was always concerned about how others were feeling. But the illness showed me that there is only one Minusch, and there is no second, so I need to take care of myself. That is why I also learned to set boundaries, say no, and stand up for myself. If I notice something is not good for me, I now take immediate action. I was not like that before. I used to beat around the bush, procrastinate, and make excuses for people. I do not do that anymore. I do not have time to get upset because life is short. My friendships have also become closer, and I have cut some people out of my life because some friendships were toxic. Not that you would define these friendships as toxic at first glance. They were the kind of friendships that drain your energy or involve people who constantly complain. I was not aware before that such things or people were dragging me down. Cutting these people out of my life has given me so much balance. I can hardly believe it, but I have never felt so balanced in my life. Those unconscious stress factors are no longer there.

6. How has the illness changed your relationship with God?

Minusch: I have come much closer to God. I remember when I had trouble sleeping at the beginning, I called the crisis hotline, and the staff there prayed with me over the phone, which I found very comforting. They also sent me a small book about the church and Jesus. During that time, I read a lot from the Bible, even passages I did not know before… For example, I was already familiar with Psalm 120, but during that period, I read it very often because it fit my situation. I also frequently spoke with the pastoral counselor…The day I found out that I would need chemotherapy, I was angry. But I wanted to wait and see what would happen…I realized that God is always there and looking out for me. Even if it was a terrible situation, He is there the entire time. He has not left me alone. I thought about other situations in my life. Situations that were incredibly bad, where I was always supported. I was sad and angry, but the solution was always just around the corner.

7. If you had 3 wishes, what would you wish for?

Minusch: I would wish for better weather, good health and to have a beautiful and fulfilling life.

8. What tips do you have for people who are in the same or a similar situation as you were back then?

Minusch: I would also advise against googling or following certain Instagram profiles, as everyone has their own individual diagnosis. Secondly, request a consultation with doctors. And lastly, accept help. Admitting that you are ill. People often associate cancer patients with the verb ‘strong’ and I have the feeling that patients try to fulfil this. But you are ill and have cancer – that is not a cough. You can be ill and do so with a clear conscience. For example, I felt guilty about my work colleagues because I thought to myself: ‘Shit, now I cannot go to work’, but when you are ill, that is the way it is. You are allowed to be sick and recover and take the time you need and get fit. I stressed myself out to get fit again and put myself under pressure.


Find Minusch Afonso on Instagram: https://www.instagram.com/minusch_afonso/

Give abylovesblogging a Like and a Follow on Instrgram: https://www.instagram.com/abylovesblogging/

Support DKMS Germany and become a stem cell donor (Germany): https://www.dkms.de/

Support DKMS USA and become a stem cell donor (US): https://www.dkms.org/

Study on Breast cancer in Germany: https://pubmed.ncbi.nlm.nih.gov/38702333/

Schmetterlingclara – “Life has so much to offer if you let yourself get involved”

© Instagram: @schmetterlingclara
  1. You are very active on Instagram and take your followers into your everyday life, how did you come to this?
    • Clara: As a teenager, I actually only consumed Instagram myself and I came across a few accounts where people affected by the disease talked about their illnesses. So I thought I could do the same and founded my account @schmetterlingclara in 2018. At first, I did not dare to speak directly to the camera or really say anything private about myself. It was not until spring 2021 that I jumped over my own shadow and posted a personal story. And then the whole thing started rolling. I was allowed to introduce myself and my story on various other Instagram accounts and as a result, more and more people became aware of me. Then one day, when I posted (in my eyes totally embarrassing) dance reel which went viral, the number of my subscribers skyrocketed. Since then, new followers have been coming in all the time. I post what I think is important so that more people learn about my condition and so that they can better understand those who are affected by my condition, but also those affected by other conditions/disabilities, and see life from a different perspective. But I also like to respond to the wishes of my followers and answer questions, because as an outsider you often do not know all things.
  2. You also do educational work on Instagram about your disease (Epidermolysis Bullosa), how important is that to you?
    • Clara: This has become very important to me. People often stare at me on the street just because I “look different”. People whisper behind my back and make wild assumptions about what I might have. Many also keep their distance and pull their children away because they think I am contagious. And still others approach me and want to sell me their “healing water” or invite me to their sect because they believe that God and/or Jesus could heal me. But I also have to explain myself and my illness to doctors and carers again and again, because even in the medical field, most people do not know much about my illness. And that is exactly what I want to change. I would like to educate people about EB (Epidermolysis Bullosa), so that we sufferers are no longer constantly stared at and we do not have to explain ourselves over and over again. But I also want to campaign for issues such as disability in general, because there is still so much need for education and action there too. Because we can only achieve something if we are loud together. And I am already very well known within our “EB community” and I am now often recognised on the street.
  3. What positive or negative experiences have you had on social media?
    • Clara: I have to say that I am very lucky in this area. I get 98% positive and kind comments and messages. But of course there are always the odd stupid comments. Partly out of ignorance, because many people come across a reel or a photo of me while browsing and have no idea what I have because they (like most people) have never heard of EB. But of course there are always stupid comments from people who do not want to or cannot accept my opinion and my point of view. It is not about “being right” or anything like that. One of the most popular topics is the word “disability”. Many other influencers and I hate it when people try to use the word “disabled” to describe us […]. I was born with this disease, I do not know any other way, but for most people it is hard to imagine. I am really grateful to have such a great community that supports me, that rejoices with me when nice things happen and also listens to me and understands when I am not feeling well. Many people are always worried when I do not post for a day. I could not have a better community because they are the ones who motivate me to keep going every day.
  4. What is your support on days when you are not feeling good?
    • Clara: My family, my friends and the prospect of upcoming wonderful events. My family and friends are always there for me and support me as much as they can. Especially with my friend, who also has EB, I can have a good moan to her at any time and about anything because she understands me, as she often goes through the same things as I do. But my “healthy” friends are also always there for me. What helps me varies and also depends on the situation. Sometimes it helps me to go out, do something and distract myself. On other days, I do not want to see or hear anyone and then I just want to be alone and have some peace and quiet time. And sometimes it also helps me to talk about it. With my parents and/or with my friends. I often visualise my thoughts and feelings about on Instagram. Just as it comes into my head and then I get a lot of love messages that build me up again.
  5. How would you like society to treat people with your or similar illnesses?
    • Clara: Firstly, I would like people to approach me with genuine interest and ask me directly if they have any questions. […] I wish to be treated as a fully-fledged person, because unfortunately many people still believe that you are also mentally limited if you are in a wheelchair and travelling with a companion. Of course, there are situations in which you have to be considerate of people with disabilities and/or chronic illnesses, but otherwise we want to be treated as normal as everyone else […].
  6. How do you (always) manage to deal positively with your to deal with your illness in a positive way and draw strength from it?
    • Clara: Even though it may seem like it, but I am not always positive. There are a lot of days when I just think everything is rubbish. But it is true that I have a positive attitude to life from the ground up because I simply love life. I have lovely people around me who give me strength and I always try to do lots of things. So, that I always have something to look forward to. I have already achieved and experienced so much in my life, both positive and negative, and I just want to experience so much more, because life has so much to offer if you let yourself get involved.
  7. In your opinion, what are the disadvantages of social media?
    • Clara: That the inhibition threshold is so low. You can simply create a profile with a false name and no picture and then post lots of nasty comments. Or that many people do not really think about how their message might be received by the other person, but simply type away quickly. Most of such people would not dare to say such mean things in person. I think, at least they would probably more carefully before saying or writing something.
  8. On Instagram you do every now and then Q&A sessions. What is the strangest question you have been asked?
  9. Clara: To be honest, I do not even know anymore, but many people always ask whether it is even possible for me to go to the toilet normally or whether I can have a relationship with my illness. These questions somehow seem to have a magical attraction. But I now simply ignore these and other private questions.
  10. What advice would you give to people who suffer from this or similar illness? How do you manage stay positive and notb to desperate?
    • Clara: I know it is hard, but you have to learn to accept it, live with it and accept yourself as ‘you are’. Because you cannot change it. You should just try to make the best of it. Make the most of every good day and do as much as you can, have fun but also just do everyday things like any other “normal” person. School, work, studies, household chores etc. give you a regular, relatively normal daily routine. Because this also gives you a meaningful task. Otherwise, just LIVE life and enjoy it.
  11. Unfortunately, there is still no cure for EB. Do you (still) hope that this will change at some point? And how frustrating is it to live with this fact?
    • Clara: I do not know any different. I have had the disease since my birth and I have accepted that there will be no cure, at least for me. I do believe that there will be cure at some point, but I think for newborns where the disease is not yet so advanced. However, research is still progressing and there are more and more ways to alleviate the symptoms and comorbidity such as skin cancer. As a result, life expectancy continues to increase and that is something that gives me hope.
  12. You are not just a blogger on social media, you are also creative. How did you start painting or drawing?
  13. Clara: I used to love drawing as a child, but then I did not really get round to it when I was a teenager due to stress at school and other hobbies. During the first lockdown I started drawing again and somehow it became more and more and some of my followers said that I could also sell my stuff. Somehow it turned out that today I mainly create handmade and digitally designed cards for every occasion (Christmas, birthday, Easter etc.) and sometimes sell them too.
  14. What is your personal and most fervent wish?
  15. Clara: I wish to get an assistance dog. Unfortunately, that is not possible at the moment for a number of (private) reasons.
  16. If you had 3 wishes, what would you wish for?
    • Clara: 1. Healing, of course 2. An assistance dog and the opportunity to travel more easily and frequently.

Dear Clara,

Thank you so much for being so honest and open in our interview. It was a pleasure to get to know you and to speak with you about a very important topic. I hope you enjoyed the interview as much as I did. Thank you for your time and your awareness work on social media. Personally, I wish you all the best and that you stay as positive as you are! Best, Aby

@For all visitors of my blog, you can find Clara on Instagram by clicking the link below!

https://www.instagram.com/schmetterlingclara/

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