Since 2015, we (the International Alliance of Dermatology Patient Organizations (IADPO), also known as GlobalSkin) have been working with patient organizations to better understand what matters most to people living with skin conditions – seeking ways to drive change that will make a difference.
The first ever World Atopic Eczema Day (September 14, 2018) truly embodied this kind of approach. Together, we launched AltogetherEczema – a new movement dedicated to the global eczema & atopic dermatitis community – aiming to identify critical issues, share knowledge and deliver action to improve lives.
Encouraging action for the eczema community
In just three months, AltogetherEczema has become ‘the’ online hub of information and personal stories, with almost 8,000 people exploring the site and 2.5 million reached on social media*.
Over 340 of you have already participated in the AltogetherEczema survey, providing valuable insights into how this condition impacts daily life and the barriers that are encountered.
You shared some powerful stories, revealing what it’s really like to live with the disease…
“A face cannot be hidden. People are shocked, confused and made uncomfortable by a flared-up face – all feelings you don’t want to trigger when walking into a room.” (Helen’s story)
“This disease does not matter to everyone, yet people’s lives and families can be destroyed. It is a real ordeal that I do not wish upon anyone.” (Stéphanie’s story)
“Trying to distract myself from the itch is exhausting.” (Kuniko’s story)
And you inspired other community members worldwide to work towards positive change for people living with the condition…
“I’ve made it my life's mission to help others with eczema atopic/dermatitis. Ultimately, I want to help prevent it and find a cure.” (Ashley’s story)
“I have learnt to deal with it with a positive attitude and to share awareness about it to educate the public and hopefully improve the life of those who have the condition.” (Melissa’s story)
“Looking back at these experiences as an adult, I think it made me stronger” (Joan’s story)
More to be done
Launching a project of such magnitude would not have been possible without the support of the community, so as we close the year, we wanted to take the opportunity to thank everyone for joining the movement.
“In 2018, we’ve come a long way to help kickstart a conversation about what matters most to the eczema and atopic dermatitis community, helping us towards achieving meaningful and relevant change,” said Christine Janus, CEO of GlobalSkin. “We’re grateful to everyone who has supported AltogetherEczema so far, sharing their stories and experiences with such generosity.”
But, as we end 2018, we should not forget that the pursuit of better lives for people with skin conditions is a long-term one. And, in 2019, we need your help to make a difference to those living with eczema…
Have your say: what would you like to see on AltogetherEczema in 2019?
Visit AltogetherEczema.org to join this growing global community and join the conversation on Twitter and Facebook by using the hashtag: #AltogetherEczema
*total impressions c. 2.8 million across Facebook and Twitter