UPPER NYACK, N.Y.–(BUSINESS WIRE)–The Global Healthy Living Foundation (GHLF) announced a $1.6 million four-year grant from the Centers for Disease Control and Prevention (CDC) to enhance awareness and education about polymyalgia rheumatica (PMR).
GHLF’s work will analyze PMR data, assess awareness among health professionals, and convene expert panels to improve diagnostic tools. The goal is to bolster the understanding of PMR among patients, medical professionals, and the public.
Emphasizing the significance of the grant, Cleveland Clinic rheumatologist and researcher Len Calabrese, DO, a key player in the initiative, stated, “This goes beyond medicine; it’s about enhancing quality of life. We can only enhance the quality of life for those who get diagnosed in the first place. More education is not just required; it is absolutely essential.”
A chronic inflammatory rheumatic disease, PMR primarily affects people over 50 and is characterized by sudden pain, stiffness in the neck, shoulders, and hips. It can also be accompanied by fatigue and low-grade fever. PMR currently affects an estimated 800,000 U.S. residents. It is frequently accompanied by giant cell arteritis (GCA), a serious condition that causes inflammation of certain arteries. Given its overlapping symptoms with other conditions and the absence of a definitive test or specific biomarkers, diagnosing it is challenging. This highlights the pressing need for better education on the disease and its symptoms.
Christine M., a PMR patient, voiced her frustration saying, “It’s tough, people around [you] don’t get it. There’s not good info on what this is.”
The knowledge gap concerning PMR is striking, especially when compared to conditions like rheumatoid arthritis. “Our understanding of PMR stands at merely 3 percent of what we comprehend about rheumatoid arthritis, which affects a notably younger demographic,” said Shilpa Venkatachalam, Director, Patient-Centered Research Operations and Ethical Oversight at GHLF.
“Deepening our research on PMR will not only enhance broader health strategies but also address implications from heart health to vision. As PMR emerges as a side effect in cancer treatments, the urgency of our mission is underscored,” she said.
For more insights about the Global Healthy Living Foundation and its ongoing initiatives, please visit https://www.ghlf.org.
About Global Healthy Living Foundation
The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French. Our ArthritisPower® (ArthritisPower.org) patient registry has more than 40,000 consented patients who participate in best-in-class patient-reported outcomes research. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient council made up of people living with a wide range of chronic illnesses, that now serves more than 46,000 subscribers. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, eRheum (eRheum.org), for telehealth and virtual-care support, and a constantly refreshed library of podcasts via the GHLF Podcast Network. GHLF never asks the public for donations. Visit ghlf.org for more information.
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Susan Jara, Director, Patient Education
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