Spotlight shines on the ‘Heroes’ during Fabry Awareness Month

Patients, support teams celebrated in Fabry International Network campaign

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by Mary Chapman |

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Fabry Awareness Month, which is marked every April to draw attention to Fabry disease, is shining a light on the “heroes” who are living with the disease and those who support them.

The month’s activities seek to heighten awareness among the general public, as well as among researchers, health professionals, industry representatives, public authorities, and lawmakers.

Fabry, which occurs in all genders, generally has a more severe effect on boys and men. One in 22,000 to 40,000 boys are thought to be affected by the classic, more severe disease type. The rare disorder’s atypical form affects about 1 in 1,000 to 3,000 male patients and 1 in 6,000 to 40,000 female patients.

The genetic lysosomal storage disorder, which mainly affects the nervous system, heart, and kidneys, results from fatty molecules that accumulate in small blood vessels and most body tissues. Its symptoms can include severe pain and burning sensation, kidney impairment, skin abnormalities, cerebrovascular complications, and heart disease, as well as eye, hearing, respiratory, and gastrointestinal issues.

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Raising awareness of Fabry disease is crucial to improving quality of life

Fabry International Network reprising its #FabryHeroesMonth campaign

This year, the nonprofit Fabry International Network (FIN) is reprising its #FabryHeroesMonth campaign to celebrate patients and members of their support systems.

“This April — during Fabry Awareness Month — we want to celebrate the support system of the individuals living with Fabry,” the organization states on a webpage. “They might not always be facing the disease themselves, but can also be true superheroes.”

Throughout the month, the nonprofit plans to spotlight Fabry’s heroes on its social media platforms and asks campaign supporters to follow suit.

To join and promote larger discussions around Fabry, patients are also encouraged to share on social media their own stories of hope and resilience.

“She always goes above and beyond to make me feel welcomed, heard and comfortable during my treatment,” Gina, 33, a patient in Japan said of her nurse on a FIN Facebook post. “She’s the key person in my medical team and has been with me through all of my good and bad days. I don’t feel like a number for a second and I’m so thankful for her.”

Elsewhere, the Fabry Support & Information Group will present its 11th Annual Virtual Fun Run & Walk from April 27 to May 4 to coincide with Fabry Awareness Month. The goal is to raise $12,000 to support the nonprofit, which provides a variety of resources for patients and their families.

“The Fabry Fun Run is a one mile jog or stroll in your neighborhood or anywhere safe,” notes the organization on the event webpage. “Since the pandemic, the event has been held virtually which has allowed people from all over the United States to participate. This non-athletic, non-competitive event has helped to raise awareness, honor the families affected by Fabry disease and also remember those we have lost.”