These Resources Can Help You Spread Awareness About Fabry Disease

Because April is Fabry Disease Awareness Month, I, along with many organizations and people, help to educate patients, family members, friends, caregivers, healthcare professionals, and the broader population to improve the recognition, diagnosis, understanding, and management of Fabry disease.

Since 2012, the Fabry International Network, the U.S. National Fabry Disease Foundation (NFDF), the U.S. Fabry Support & Information Group, Fabry Australia, and other advocacy groups and communities have formally recognized April as our month to provide increased awareness about the disease.

The Fabry disease awareness ribbon. (Courtesy of Jerry Walter)

As the founder and president of NFDF, providing education and awareness about Fabry disease is something I do every day, but this month we do more.

Throughout the year, I engage the broader Fabry disease community and the public when possible, through various modes of communication, such as:

• The NFDF’s robust educational website
• The NFDF’s Fabry Focus e-newsletter
• The NFDF’s Facebook page, with over 3,700 followers
• The international Fabry community’s Facebook group, with nearly 3,700 members and where I am one of two moderators
• The NFDF’s Twitter page
• The NFDF’s YouTube channel 
• The NFDF’s 2021 virtual education meeting series
• The annual NFDF’s Fabry Family Education Conference (which was virtual in 2020 and 2021)
• Being a guest speaker at various educational events
• Participating in occasional news channel interviews
• Through my monthly Fabry Disease News column called “Fabry: A Road Less Traveled”

In April, I provide almost daily information posts about some aspect of Fabry disease via the Fabry Focus e-newsletter, the NFDF’s Facebook page, and the NFDF’s Twitter site.

In addition to all of the formal ways of providing Fabry disease education and awareness listed above, I spend a great deal of time corresponding by email and talking with people on the phone.

It seems to help people to talk with someone with Fabry disease, especially as they start on their respective journeys. Many people I talk with are newly diagnosed or believe they may have Fabry disease but need assistance getting the GLA gene test.

Other people want to talk about specific symptoms. As a 66-year-old man with classic Fabry disease, my list of Fabry disease complications (my Fabry disease résumé) is very long and diverse, so I have lots of experience to talk about with others who have questions.

The resource I use the most to give people an easy-to-understand summary of most of the common symptoms of Fabry disease is a symptoms presentation I developed in 2011. A friend with Fabry disease, Mike J., illustrated the presentation based on the concept images I provided. Mike did a great job with the illustrations.

My column from Feb. 17 titled “In Managing Fabry Symptoms, We Must Leave No Stone Unturned” provides more details about the symptoms presentation.

After developing the symptoms presentation, I narrated the presentation slides to develop the NFDF’s first video on our YouTube channel. To date, the Fabry symptoms video has been viewed over 21,500 times since it was first published in 2012.

About a year later, I had the symptoms presentation made into an educational symptoms calendar the NFDF distributes, along with other Fabry disease awareness materials, when people subscribe to the Fabry Focus e-newsletter. We still have many 2021-2022 calendars to distribute this year as people subscribe to the e-newsletter, or if they are already subscribed, as they request one.

Fabry Disease Educational Symptoms Presentation. (Courtesy of Jerry Walter)

As I’ve done in the past few years, beginning on April 1, along with the announcement of the start of Fabry Disease Awareness Month, I make an educational post about some aspect of Fabry disease almost every day. The April 1 post on the NFDF’s Facebook page has reached almost 5,000 people to date.

An April 9 Fabry Disease News article by Mary Chapman titled “‘Break a Sweat for Fabry’ and Other Activities Mark Awareness Month” provides more information about activities for this year’s Fabry Disease Awareness Month.

According to the EveryLife Foundation for Rare Diseases, there are 7,000 known rare diseases, but only 7% of them have a treatment available that’s approved by the U.S. Food and Drug Administration. Because treatments are approved and available for Fabry disease, spreading awareness ultimately means extending, and even saving, lives. It’s really important!

***

Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.