Do you know how atopic eczema feels like?

Welcome to atopical Lives

Atopic eczema (also known as atopic dermatitis) is much more than a skin disease, it affects the whole body of patients, their life and mental health.


The #AtopicalLives exhibition is an EFA project featuring real people affected by atopic eczema of different age groups, portraying for the first time the similarities and differences among patients in Europe.

#AtopicalLives video series

Under the skin you see
An endless race to find a balance between the constraints of your illness and the will to live to the fullest. Watch these atopic eczema patients on top of their lives, under the skin you see.
Skin in the game
Daily treatments and family: children with atopic eczema learn early the importance of discipline to be healthy and play, skin in the game.
Atopical Lives
The best happens when other people welcome you as you are, despite how the eczema looks today.

My atopic skin

"You can improve the quality of life with a good treatment. Eczema is unfortunately not curable, but you can feel very well having a well-treating doctor and you can look optimistically into the future."
Atopic eczema patient from Germany  
"Talking about atopic eczema is already a first step towards liberation, because we need to talk about it, encourage each other."
Atopic eczema patient from Spain  

My life with atopic eczema

"This disease is a hard time, especially in summer, everything hurts, itches and you scratch until you bleed. Without support of the family and doctors, it would be very difficult to deal with atopic eczema."
Severe atopic eczema patient from Germany  
"There are many people who are suffering silently, the general public doesn't know what it means to have eczema."
Atopic eczema patient from Sweden  

My atopic eczema burden

We struggle with daily care, we always pay attention to our diet, clothes, we must be careful not to sweat. It limits us in various activities. It also affects your intimate life with your partner”, 
Severe atopic eczema patient from Slovenia.
“Even when there is full control of atopic dermatitis, the family is still impacted, especially the parents because they are always concerned about whether there will be a flare, whether there will be an exacerbation of the disease because it is a chronic disease without a cure”
Patient representatives within the Atopic Eczema Consensus Europe Committee.

Look at me, I have atopic eczema

"You can improve the quality of life with a good treatment, eczema is unfortunately not curable, but you can feel very well having a well-treating doctor and you can look optimistically into the future."
Atopic eczema patient from Germany  
"All people always emphasize how tolerant they are, but if they are close to me, for example sitting in the same restaurant, they try to look the other way or even sit in another place."
Atopic eczema patient from Spain  
Close

About Atopical Lives

When people open their heart and homes to show what really means to live with a chronic skin disease like atopic eczema, you can get back a reality punch.

 


Atopic eczema is much more than a skin disease, it affects the whole body of the patients, their life and their mental health.

 


The #AtopicalLives exhibition is a project started in 2018 by the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) with the support of its members associations across Europe. The project features real people of all age groups living with atopic eczema , portraying for the first time the similarities and differences among patients in Europe.

 


This online exhibition is an invitation to discover and understand the unknown, intimate aspects of living with atopic eczema.

 


If you or someone close to you needs support with the atopic eczema, consider contacting national patient groups: you are not alone.

 


If you have been impacted by these real-life stories, do use them and share them. The patients in the pictures want them to make a difference.

 


Acknowledgements


EFA thanks wholeheartedly the 19 patients and their carers, who chose to contribute to the atopic eczema community in 2018 and 2022 by welcoming us to their lives in eight different countries (Czech Republic, France, Italy, the Netherlands, Serbia, Slovenia, Spain, Turkiye).

 

Thanks to Lurdes R. Basolí, for her sensitivity and her talented eye to capture the beauty of life.

 

EFA thanks its sustainable funding partners whose unrestricted educational grants have made possible the Atopical Lives project as follows:
- Pfizer and Sanofi/Regeneron for the 2018 pictures, video and exhibition
- AbbVie and Sanofi/Regeneron for the 2022 pictures and 2023 videos

Follow us

#AtopicalLives

  

twitter facebook YOUTUBE

Share it

#AtopicalLives

  

twitter whatsapp

 

Contact

EFA - European Federation of Allergy and Airways Diseases Patients' Associations

35 Rue du Congrès, 1000 Brussels, Belgium

E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Tel.: +32 (0)2 227 2712 - Fax: +32 (0)2 218 3141

www.efanet.org/campaigns/atopical-lives

EU Transparency Register Id. Num.: 28473847513-94

 

Credits

Lurdes R. Basolí - Photography and video

Workship Studio - Web design

Joao Veríssimo - Coding

EFA - Project direction

Copyright © EFA - Atopical Lives Project

Eczma stories

Since I was born, I carry atopic eczema on my skin. In the current time, I try to live normally, but it's hard to control my skin... It stops me doing thinks I like. I follow treatments but they don't help that much. It feels that I am giving everything that I got, yet I don't see positive results on my skin... It makes me feel sad and depressed.

Helder, 19, Portugal

Can’t explain the full story in 500 words. However I’ve had it as small as I can remember. Then it came back to beat me badly in 2014 when I was at Dance College in London. I was LIVING the DREAM of DREAMS. I couldn’t believe I was there. It took me though. In 2015 December I had to give it all up. I’m still battling. I’m still trialling new methods & medications. It’s the biggest hardest journey ever. It’s horrible. It’s harsh. It’s lonely. There NEEDS & MUST be more awareness.

Fay, 25, United Kingdom

I've lived with atopic eczema since I was a toddler. My life is non stop itching and scratching, my face and arms flare up from the warm water in the morning. It's made a lot of things difficult. I'm constantly needing to upgrade my skincare, and it costs a fortune. I have scars from scratching in my sleep, I'm always self conscious about it. However, it has gotten better. Quite a bit better. With a lot of care, things have changed.

Dean, 18, Great Britain

Living with eczema means itching constantly, and scratching in response, and then drawing blood, and trying to hide that. Living with eczema means being told you'll "never be cured" and being prescribed all manner of potions and lotions, none of which work. It means waking in the night in agony, bleeding over sheets and clothes, paying for any treatment that might work regardless of the cost, and scalding yourself in the shower to try to find peace. Living with eczema doesn't get enough credit.

Victoria, 20, United Kingdom

I would like if skin care products were paid by the health insurance, the increased need for them is already a burden, I of course have an increased need for care. More causes-treatment should be explored on the patient as such.

Dirk, 52, Germany

I scratch myself and it means complications, I cannot swim and do sports. I need to spend more money on clothes and cannot have tight clothes nor fully covering shoes. Work clothes can be a problem, the ability to adapt them. I am worried when I am looking for a job because you cannot wash your hands as often as may be needed. The employment service needs to understand that I cannot search for all jobs. >>

Anna, 20, Sweden

The medical world is sometimes so difficult, they do not cooperate. I really had to urge the dermatologist to look further. He did not want to. Eventually, I went to an allergologist and it turned out to become better with dietary adjustment. It’s important to work together and to look beyond.

Eva, 33, Netherlands

In acute conditions, it puts a lot of strain on me, both mentally and physically, and it also puts a strain on finances, healthy living is expensive and eczema limits many things I can eat, and manythings are expensive and you have to be able to afford it.

Michaela, 28, Germany

Share your story

Please enter your name

Invalid Input

Your email address is invalid

Invalid Input

0/500

Please write your experience

Invalid Input

Invalid Input

Invalid Input

Download image

Dear visitor,

 

Please remind that all photographs on the Atopical Lives website are in printing quality for non-commercial purposes only and require indication of copyright “© 2018 or 2022, Lurdes R. Basolí / EFA Atopical Lives Project”.

 

Please remember to comply with the mandatory attribution and make sure to read the terms of use below:

 

Terms of Use

The www.efanet.org site and its original content are owned by EFA – European Federation of Allergies and Airways Diseases Patients’ Associations – and are protected by European copyright and intellectual property and proprietary rights laws. Your access to download and use of the pictures in www.efanet.org/campaigns/atopical is conditional on your acceptance of and compliance with the following terms of use:
 
1. Downloading the pictures does not grant any property rights but permission for use only. This permission can be revoked by EFA ex nunc at any time without a need for justification.
2. Downloading, distributing and publishing the pictures, in digital or printed form, is allowed for non-commercial use only. You are not allowed to license, sell, rent, lease, disclose, exhibit or otherwise commercially exploit the pictures.
3. No photograph will be retouched, cropped or transformed in any way. The original format of the images will be preserved.
4. Publishing the pictures in digital or printed form requires indication of copyright “© 2018, Lurdes R. Basolí / EFA Atopical Lives Project”
5. The pictures may be published in blogs and both online and print newspapers, journals and magazines when indicating copyright.
6. The pictures may be used for publication in digital and printed form only when being contextualized with atopic eczema.
7. Any use of the pictures without previously downloading them directly from www.efanet.org/campaigns/atopical is bound to the terms of use stated above. Any misuse will be pursued and has legal consequences. This is a legal contract. By downloading the picture you agree to be bound by these terms.

 

Download Image

Dear visitor,

 

Please remind that all photographs on the Atopical Lives website are in printing quality for non-commercial purposes only and require indication of copyright “© 2018, Lurdes R. Basolí / EFA Atopical Lives Project”.

 

Please remember to comply with the mandatory attribution and make sure to read the terms of use below:

 

Terms of Use

The www.efanet.org site and its original content are owned by EFA – European Federation of Allergies and Airways Diseases Patients’ Associations – and are protected by European copyright and intellectual property and proprietary rights laws. Your access to download and use of the pictures in www.efanet.org/campaigns/atopical is conditional on your acceptance of and compliance with the following terms of use:
 
1. Downloading the pictures does not grant any property rights but permission for use only. This permission can be revoked by EFA ex nunc at any time without a need for justification.
2. Downloading, distributing and publishing the pictures, in digital or printed form, is allowed for non-commercial use only. You are not allowed to license, sell, rent, lease, disclose, exhibit or otherwise commercially exploit the pictures.
3. No photograph will be retouched, cropped or transformed in any way. The original format of the images will be preserved.
4. Publishing the pictures in digital or printed form requires indication of copyright “© 2018, Lurdes R. Basolí / EFA Atopical Lives Project”
5. The pictures may be published in blogs and both online and print newspapers, journals and magazines when indicating copyright.
6. The pictures may be used for publication in digital and printed form only when being contextualized with atopic eczema.
7. Any use of the pictures without previously downloading them directly from www.efanet.org/campaigns/atopical is bound to the terms of use stated above. Any misuse will be pursued and has legal consequences. This is a legal contract. By downloading the picture you agree to be bound by these terms.
Please choose one option

Please enter your name

Invalid Input

Please enter your position

Your email address is invalid

Invalid Input

Invalid Input

Invalid Input

Invalid Input

Invalid Input