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Colourful. Loud. Open. This is how she describes herself. We know Clara as a bubbly personality and one of our most loyal fans. She has by now owned all My Add On products 🤯 So it's high time we introduced her to you....
15 February 2024

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Written by: Imke & Yne

From carefree child's play to rare condition

About dealing with a rare condition at a young age, and the search for yourself in a world that is not always accessible.
Who?

Clara Wübbenhorst

Age?

21 years

Where?

Keerbergen (Belgium)

Studies?

Instrument-making training at CMB Puurs

Clara Is 21 years old and beaming self-love and self-confidence out. Her pimped-out wheelchair and crutches burst with personality and give her lively nature again.

But that has not always been the case. Clara travelled a long way to be where she is today. She tells us about the search for herself and how she deals with her rare condition - Progressive Neurodegenerative - Langerhans cell histiocytosis (ND-LCH). About the challenges she has already faced in her relatively short life. And she shares her powerful message of self-love 🫶

From child's play to diagnosis

As children, we didn't have to worry about the world around us. We could just play, run and jump carefree. Initially, it was the same for you. But that suddenly changed. How did that happen?

Clara: "When I was 15 years old, I noticed that my body was not always cooperating. I stumbled regularly, my foot sometimes dragged on the ground and I started having trouble concentrating. It was little things which I registered, but of course could not connect.

Clara before

Of course, it didn't help that those changes came at puberty. 

Clara: "Indeed. At first I thought "Is that part of it?", "Are these physical changes normal for a teenager?", "Will it still go away?" ... I was left with a lot of questions I didn't know the answers to. I often felt like the odd one out because I walked differently from the rest. And that brought quite a bit of fear and uncertainty."

How exactly did that manifest itself, that 'walking differently'?

Clara: "I often had problems with my balance while walking. I often played that "off" as a "dance move" (which was rarely successful). As soon as you look different or do something different, you get attention - whether you want it or not. And I didn't want that at all. I didn't want to be seen and closed myself off more and more from the outside world."

"I had so many questions. "Am I good enough?", "What will people think about me?", "What's the matter anyway?". As a teenager, that is by no means easy." 

As soon as you look different or do something different, you get attention - whether you want it or not. And I didn't want that at all.

How difficult that must have been to be so in the dark and full of uncertainty at such a young age... Did you eventually get more clarity?

Clara: "Yes. I received my diagnosis in late February 2022: ND-LCH, or Neurodegenerative - Langerhans Cell Histiocytosis. It is a rare condition that occurs mostly in children, but also in adults."

Rare. So probably also quite unknown?

Clara: "Both myself and those around me had never heard about it. And doctors and specialists don't know much about it either."

Has the diagnosis brought some kind of 'peace' for you?

Clara: "I finally know something is wrong, but because hardly anything is known about the condition, I am left with a lot of questions. Nobody can really tell me how it will affect my body in the long term. Unfortunately, I don't know anyone else with the same condition to whom I could turn."

Then, despite not knowing any peers, is there a place or organisation you can turn to?

Clara: "No, there is not really one specific organisation I can turn to. In the meantime, I did find a place with the youth work of Komop tegen Kanker - the AYAs, but of course, despite my various chemos, I don't really belong there fully."

Disabled Eliza on Instagram

Are there other ways to connect with peers?

Clara: "I am a member of a number of support groups on social media. And there are also Instagram channels already posting recognisable content about and for people in wheelchairs like me. Disabled Eliza is one of them. Who is a British influencer who points out and names problems in society. And she also focuses very strongly on self-love and colour. I find that very important myself, because I have hidden so many times in the past."

I finally know something is wrong, but because hardly anything is known about the condition, I am left with many questions. No one can really tell me how it will affect my body in the long run.

Self-love and strength in an unknown world

So social media, and specifically then the right influencers, have had a big positive impact on your self-confidence and self-confidence. But then, who (or what) really won you over to show up to the outside world?

Clara: "Myself. I decided to stop worrying about what others think of me. That makes no sense anyway. And I no longer care what they think. What does matter is what me thinking. How me me feel. How me see myself. And above all, how me present myself."

That's a big turnaround compared to 15-year-old Clara. 

Clara: "Back then I was so insecure. But now I know: I am who I am. Everyone is allowed to know. That attitude has really changed my life. I realise now that life is too short to worry about people not wanting to accept me as I am."

I am who I am. Everyone is allowed to know. That attitude has really changed my life. I realise now that life is too short to worry about people not wanting to accept me as I am.

Clara now

I think a lot of people envy that mindset.

Clara: "However, it brings so much freedom. I can only recommend it. I let go of people I would rather not have in my life anymore. It's not easy, but why waste time on those who don't want to accept me for who I am? I am proud of who I am. That choice gives me so much strength to show myself to the outside world. In retrospect, when I was diagnosed, I had two choices: not to care about anything else and just be myself and do what me wants, not what others want for me. Or, let myself be crushed by the disease and play victim alone. Only I never saw that second one as a real option."

So you have had to decide many times who are your friends and who are not. But are there people you can always turn to to share your feelings and worries?

Clara: "Yes, fortunately I can always count on support from my parents, family and a few close friends. Still, for a long time I kept my emotions to myself and bottled them up, which was ultimately not good. It led to depression when I was younger, and I had to take a one-year school break.

My secondary school career was not an easy ride either because of those concentration problems. I tried different courses, from Latin and Science, to TSO, and finally Economics-Modern Languages in ASO. Although the studies interested me, I couldn't always concentrate well. So I decided to do an exam board, which I eventually managed.

Later, I tried other courses such as TEW and Musicology. Unfortunately, I had to discontinue those too, partly because of the concentration disorder and partly because of the poor accessibility of the school buildings."

Fortunately, I can always count on support from my parents, family and a few friends. But sharing my emotions was a challenge.

Fighting for accessibility and acceptance

Building accessibility is also often a stumbling block for our other ambassadors. Our society is still very much inaccessible. Public transport also scores very badly in this respect. Do you experience this too often?

Clara: "Yes, it's really terrible. It sometimes makes us - wheelchair users and other people who need extra help - feel like we are 'just' second-class citizens. But we are not! We are just like everyone else, with the same (basic) needs to move freely without all those extra difficulties. But we often face obstacles. People are far too little aware of that."

Do you have an example of such an 'obstacle'?

Clara: "As wheelchair users, we have to book public transport at least a day in advance, while we don't always know how we will feel the next day. And then we also have to be on the platform 20 minutes in advance. That's quite a lot, isn't it?"

Indeed, I think that is a long time. Nobody likes to wait a long time for fun.

Clara: "People often assume that we have oceans of time. That we don't work or don't go to school, and just sit at home. That may be true for some people, but not for everyone! We also have our appointments and commitments. Because of our disability, sometimes we also need a bit more time to get ready. So we can spend those 20 minutes more usefully than waiting on the platform. Unfortunately, this is often overlooked. Quite frustrating."

We are like everyone else, with the same (basic) needs to move freely without all those extra difficulties. But we often face obstacles. People are far too little aware of that.
Clara Wübbenhorst

Do you see change in the future for more awareness about accessibility?

Clara: "Not directly, I'm afraid. I have the feeling that we are not thought of, or at least not enough. Nor will that change spectacularly any time soon. The poor accessibility of many places still very often keeps us inside. Although there are some (catering) establishments that really make an effort for us, such as installing a ramp (ramp) to get in more easily. This is very nice, but there are still many unresolved issues, and accessibility is of course so much more than a ramp too. We don't feel welcome in many places."

The high-profile campaign at our northern neighbours
This, of course, is not okay. More and more people are using one tool or another. As a society, we really need to change that.

Clara: "I am not alone in wanting attention to this. In early 2023, for example, there was a high-profile campaign among our northern neighbours. Zonnebloem.nl, an association dedicated to people with physical disabilities, put up posters to show how inaccessible the Netherlands is. I know a lot of places in Belgium where I could put those up. I used to lock myself up because of this, just like so many other wheelchair users. Just because I couldn't get in anywhere. That's so disheartening."

You hopefully know of places that are accessible?

Clara: "Now we do. Kudos to the people who do make the effort, because that really makes a world of difference to us!"

There are some (catering) businesses that do make a real effort for us, such as installing a ramp to get in more easily. This is very nice, but there are still many unresolved issues. We don't feel welcome in many places.

So staying indoors is no longer an option for you. But are there sometimes other factors that do hold you back, such as bad weather?

Clara: "Not any more. Rain, wind, nothing stops me. And that's mainly thanks to handy tools, such as your myBlanket. The rain cover keeps my legs warm in winter and protects them from the rain when I use my wheelchair. You can probably imagine how awful it is to come home in soggy jeans. Then imagine having to stay in those all the time too. I'm so grateful that I don't have to do that anymore!

Meanwhile, I also bought the myBlanket Summer. Now I can also go outside when there is a chance of rain in summer."

Clara out and about with her myBlanket at her fingertips

But it started earlier, with the mySleeve. Don't you?

Clara: "Yes, the mySleeves also help me get outside. I used to often look forward to using my crutches: they caused sore hands, fell over, and were very monotonous and dull in colour. Thanks to the covers, I no longer have pain and can easily put my crutches together with the magnet. And also nice for me: they add colour to my crutches and are nice and eye-catching. Together with the myCover covers, they fit my personality perfectly. This makes me want to use my crutches. That way I don't always have to use the wheelchair.

Meanwhile, I even have two pairs already, that's how much I like them. My mum gave them to me as a birthday present. It is one of the best gifts I have already received."

Thanks for the candid chat, Clara! 💛

Clara's story highlights that self-acceptance in particular, as well as the support of others, is a powerful source of hope and change. Despite the physical challenges of her rare condition, Clara brims with self-love and self-confidence. She has found her strength and advocates for a greater focus on accessibility and acceptance in society. We hope her message of authenticity and self-confidence can inspire others. We are super proud that Clara is one of our ambassadors! 💖

Do you have ND-LCH yourself and would like to connect with Clara?

We are happy to put you in touch.
Please let us know!

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