Shining the light on eosinophilic diseases
• 7-13 August 2022 is National EOS Awareness Week
• Landmarks light up pink and purple in support
• #MyEoE stories shared to raise awareness and understanding
Australia’s peak national support and patient advocacy organisation for eosinophilic diseases, ausEE Inc., is celebrating its 11th annual National EOS Awareness Week (NEOSW) from 7-13 August 2022. ausEE is shining the light on eosinophilic diseases and encouraging people to learn more about these debilitating, under-recognised, yet increasingly prevalent diseases and the impact of them. ausEE aims to raise awareness for all eosinophil-associated diseases and has an established focus on eosinophilic gastrointestinal diseases (EGIDs). EGIDs are chronic diseases where eosinophils (a type of white blood cell) build up in the gastrointestinal tract causing inflammation and tissue damage1.
This may be due to a response to food and/or airborne allergens. The most known type of EGID is eosinophilic oesophagitis (EoE), where the elevated eosinophils are found in the oesophagus. The estimated prevalence of EoE is 1 in 1,000-2,000 people and has become the most common cause of food impaction presenting to emergency2.
Symptoms of EoE can include trouble swallowing, regurgitation of food, nausea, vomiting, reflux, stomach or chest pain or food getting stuck in the oesophagus (food pipe). EGIDs need ongoing monitoring and management and can greatly impact on quality of life. Unfortunately, the diagnosis of an EGID is often delayed and an endoscopy with biopsies is the only way to confirm the diagnosis. If EoE is left untreated, around 30-50% of children and adults with EoE will eventually get a food impaction, which may have to be removed in hospital. This can result in permanent scarring and narrowing of the oesophagus (stricture)3.
For the first time, Australian and New Zealand landmarks are lighting up pink and purple (the colours of eosinophils) to raise awareness for eosinophilic diseases during NEOSW, which incorporates ausEE’s annual fundraising campaign, Top 8 Challenge Day on 8 August. ausEE gives thanks to the facilitators of the more than 40 landmarks, buildings and bridges that are showing their support for people with eosinophilic diseases by lighting up. CEO and Founder of ausEE Inc., Sarah Gray, is encouraging people to get involved during NEOSW by visiting the participating landmarks on the light up night/s and taking a photo to share on social media, using the hashtags
EOSaware and #NEOSW2022. A list of light up locations can be found at Light Up Landmarks (eosaware.com)
National EOS Awareness Week also offers an opportunity for people living with an EGID, like EoE to unite and share their lived experience to increase community understanding of eosinophilic diseases. ausEE is sharing these insights through a collection of #MyEoE stories across social media and on their website at https://eosaware.com/myeoestories.
“Raising awareness also enables others who may be experiencing these ongoing symptoms, to hopefully get an earlier diagnosis, and access treatment. If this sounds like you, we encourage you to reach out to your doctor and ask… Could it be EoE?” said Sarah.
“We want people to know that they are not alone. ausEE is here to help and support people through all stages of their journey with an EGID. Being diagnosed is just the first step, and the road to receiving a diagnosis is often a long and isolating one. We urge you to reach out and join our community, we are here for you,” Sarah said.
Find out more about NEOSW and support EGID medical research at www.eosaware.com.
To learn more about EGIDs and EoE, and to access free support, please visit www.ausee.org.
References
[1] https://www.ausee.org/whatisegid.htm
[2] https://insightplus.mja.com.au/2022/15/eosinophilic-oesophagitis-a-tough-concept-to-swallow/
[3] https://allergy.org.au/patients/food-other-adverse-reactions/eosinophilic-oesophagitis
About ausEE Inc.
Founded in 2009, ausEE Inc. is a national health promotion charity whose mission is to improve the lives of those affected by eosinophilic diseases through providing support, evidence-based information, resources, advocacy and by campaigning to raise awareness and funds for further research in Australia
About National EOS Awareness Week and Top 8 Challenge day
Since 2011, ausEE Inc. has been hosting National EOS Awareness Week to raise awareness for eosinophilic gastrointestinal diseases (EGIDs). This year #NEOSW2022 is being held 7-13 August The #Top8Challenge is ausEE’s major fundraising campaign held each year on 8/8 with funds raised going to Australian medical research into eosinophilic diseases. During NEOSW on Monday 8 August, ausEE challenges people to take the Top 8 Challenge by not eating any top 8 common allergenic foods (that’s no milk, wheat, egg, soy, peanut, tree nut, fish or shellfish). Learn more and sign up at https://eosaware.com/Top8Challenge.
