Community Invited to Share Stories for Fabry Awareness Month

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by Shayna Korol |

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Members of the Fabry disease community are invited to share their stories — those of patients, caregivers, family members, and advocates — and to use social media to celebrate Fabry Awareness Month this April.

For this year’s campaign, the global Fabry International Network, known as FIN, has launched a Cool Down Fabry initiative that aims to help parents and caregivers recognize the symptoms of the lysosomal storage disorder in children.

Intolerance to heat is a common symptom, and 1 in 10 people with Fabry do not know they have the disorder. Fabry community members are invited to share their own “Cool Down Stories” about ways to avoid overheating.

“Taking off my t-shirt, rinsing it under water then ringing it out and putting it back on helps for an hour or so. Especially in the extreme summers of Australia,” one patient states on FIN’s website, adding, “A spray bottle with cool water with the setting on mist cools my head down.”

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A patient named Miranda from the Netherlands shares that she often gets overheated in hot weather so, three years ago, she put a small pool in her yard.

“When I get too hot I put on a bathing suit and lie down in the cool water for a while. When I feel better I come out,” she shared in her story.

Miranda said her wet bathing suit “works like a kind of cool pack,” before quickly adding, “You understand that a bikini does not have this effect.”

The Cool Down Fabry page features information about a variety of symptoms aimed at raising awareness of the disease. It also offers contact information for local support organizations.

Males with Fabry are usually more severely affected than females, with an estimated 1 in 22,000–40,000 men diagnosed with classic Fabry. FIN estimates that the disease impacts 1 in 100,000 people worldwide.

An umbrella group, FIN represents 62 Fabry patient associations from more than 54 countries.

Such organizations have recognized April as Fabry Awareness Month since 2012. In the U.S., the National Fabry Disease Foundation (NFDF) works with community members to obtain official proclamations of Fabry Awareness Month from state governors. This effort was interrupted by the pandemic the last two years, but has resumed in 2022.

Pictures of the 2022 governors’ proclamations can be found on NFDF’s Facebook page, and a map on Twitter shows a state-by-state proclamation status.

Throughout the month, the NFDF will provide news and information through its e-newsletter. The NFDF also provides awareness materials, including ribbons and the “My Health Handbook and Emergency Information” booklet. Contact [email protected] for more information.

Fabry Australia offers a variety of resources for raising awareness. “Gaining local media coverage for Fabry Awareness Month is a key way to educate your local community,” the organization states on its Fabry Awareness Month page. The group provides a press release template that the community can download and send to local media, and encourages people to use #FabryAwarenessMonth and #FabryAustralia hashtags to raise awareness on social media.

“If you manage to gain some coverage on behalf our Fabry Community, please share it with us so we can add your story to our social media and perhaps even website,” the webpage states.

The MPS Society UK also recognizes April as Fabry Awareness Month. For 2022, the nonprofit aims to spotlight life with Fabry and start a conversation. A page on its website features a variety of stories from people who live with Fabry and the healthcare professionals who treat them. Community members are invited to share their own stories, and use the hashtag #FabryAwareness on social media.