The Pioneering Spirit Behind Fibromyalgia Awareness: The Story of the National Fibromyalgia Association
For Lynne Matallana, chronic pain wasn’t a late-in-life advancement; it was a lifelong companion. But it was the aftermath of surgery for fertility issues in her thirties that unleashed a cascade of baffling symptoms, launching her on a frustrating, years-long quest for answers.After consulting a staggering 37 doctors, she finally received a diagnosis: fibromyalgia.
This diagnosis, delivered by a young rheumatologist, came with a sobering statistic: an estimated 10 million Americans live with this often-misunderstood condition. [1] However, in 1997, effective treatment options were scarce, and Matallana initially found herself confined to bed, battling debilitating pain and relentless fatigue.
But Matallana’s background wasn’t in healthcare – she was a seasoned public relations and advertising professional. This unique outlook fueled a powerful realization: she wasn’t alone, and the lack of awareness surrounding fibromyalgia was a notable barrier to proper care and support. “I was thinking that we really needed some awareness about this condition. There were probably a lot of other people out there who were just like me,” she recalls.
The Dawn of connection in a Pre-Social Media World
The late 1990s presented a unique challenge.The internet existed, but it was a far cry from the interconnected world we certainly know today. Social media was nonexistent, and online communities were in their infancy.”You could post data and write to people back and forth, but it was vrey primitive,” Matallana explains. Despite these limitations, she began connecting with other women experiencing similar struggles.
One crucial connection was with Karen Lee Richards, who, like Matallana, had endured a protracted diagnostic odyssey.Together, they recognized a disturbing pattern: individuals with fibromyalgia were frequently dismissed by the medical community, their pain invalidated, and their need for support unmet.
This shared frustration sparked a collaborative effort. Matallana and Richards began brainstorming ways to empower others living with fibromyalgia. Their initial meetings, held at Matallana’s home with five other women, were born out of necessity - and pain. “We called ourselves ‘the pillow posse’ because we were all propped up on pillows due to pain,” matallana remembers.
From Pillow Posse to National Movement: the Birth of the NFA
Driven by a critical lack of reliable information,public understanding,and patient support,Matallana and Richards co-founded the organization that would become the National Fibromyalgia Association (NFA). Starting with just seven members, their ambition was audacious: to raise national awareness.
Their strategy? A national conference. “I don’t know what made me think that I could do this,” Matallana admits, “but we invited 30 of the top fibromyalgia and pain researchers from around the world and held it at a hotel at Universal Studios in Los Angeles.”
The gamble paid off. The conference attracted over 600 patients and 275 healthcare providers. Crucially, they partnered with Cedars-Sinai Medical Center to offer continuing medical education credits, bridging the gap between research and clinical practice.
This event was groundbreaking. It marked the first time individuals with fibromyalgia, researchers, and clinicians had convened on such a large scale, solidifying the NFA’s position as a leading voice in the fight for fibromyalgia recognition and support. “I think the public realized that I was serious about building an organization that was going to spread awareness and help people,” Matallana reflects.
A Legacy of Advocacy: 28 Years and Beyond
The NFA’s impact extends far beyond that initial conference. Now celebrating its 28th anniversary, the organization continues to champion fibromyalgia research, education, and advocacy. It serves as a vital resource for patients, families, and healthcare professionals, providing accurate information, fostering supportive communities, and pushing for improved access to care.
Lynne Matallana’s story is a testament to the power of patient advocacy and the transformative impact of connecting with others. From a personal struggle with chronic pain to the creation of a national organization, her pioneering spirit has illuminated the path for countless individuals living with fibromyalgia, ensuring their voices are heard and their needs are met.
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[1] https://www.everydayhealth.com/fibromyalgia/guide/
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