‘Break a Sweat for Fabry’ and Other Activities Mark Awareness Month
Activities ranging from sharing educational posters to “breaking a sweat” are underway to mark Fabry Disease Awareness Month, set aside each April to call attention to this rare genetic disorder.
Awareness and education are crucial to increasing the recognition, diagnosis, understanding, and management of Fabry disease, estimated to affect about 1 in every 40,000 to 60,000 males globally and, with lesser severity and greater rarity, an unknown number of women.
Fabry patients lack an enzyme that breaks down certain body fats. As these fats accumulate in cells, organ damage occurs.
For its part, the Fabry International Network (FIN) has launched a global challenge called Break a Sweat for Fabry. The disease often causes sweating abnormalities in patients, including limited sweat production.
“By breaking a sweat for people who have difficulties sweating or can’t sweat at all, you can show your support and help raise awareness,” the organization states on a webpage announcing the challenge. For every diagnosed patient, there are 10 who are unaware of their disease, FIN reports.
Supporters are asked to get moving — run, play, dance, or work out are suggestions — and take photos of themselves “breaking a sweat.” They’re encouraged to post those selfies on their social media platforms using the hashtag #BreakASweatForFabry and adding a “sweat” emoji.
The organization is also offering printable awareness posters, a social media profile picture and cover photo, and custom Facebook frame.
The organization is also offering Fabry Awareness Day ribbons, wristbands, Fabry disease medical alert cards, car magnets, and a “My Health Handbook and Emergency Information” booklet.
Called GRIT (Getting Global Rare Disease Insights Through Technology), the year-long study seeks to enroll 150 adult patients with internet access and a confirmed diagnosis. Data collected by scientists, based at the Metabolics and Genetics in Calgary Clinic in Alberta, Canada, will go toward learning better ways to manage patient care remotely.
Some participants will have access to a virtual binder that allows them to keep all their health data in one place to easily document their health journey and see personal trends. The app helps patients be more organized, manage pain better, and better communicate with their healthcare team. The goal is to determine if the app increases patients’ ability to manage their condition with confidence.
Participants assigned to a placebo group won’t get an app for the study, but will receive one after the trial finishes.