As part of our Pain Awareness Month Storyathon, we’re collecting 3-5 minute video stories from real people with pain, talking about their personal experiences–from how they were diagnosed to how pain affects their daily life. We’ll be selecting a handful of videos to share throughout September on social media.
Remember: talking about pain is the only way we can create understanding, awareness, and most importantly: change.
Too often, due to broad misconceptions and a lack of understanding about pain, pain warriors are afraid or ashamed to speak up about their stories.
But the only way we can create change is if we start talking–to loved ones, coworkers, neighbors, clinicians, and even policymakers.
That’s why our theme for Pain Awareness Month 2019, which begins September 1, is “Let’s Talk about Pain.” We’ll be hosting numerous events, campaigns, and activities that center around this idea. In order to truly get the word out, though, we need your help.
U.S. Pain Foundation was busy in June with activities surrounding National Migraine & Headache Awareness Month (MHAM). In collaboration with member organizations of CHAMP (Coalition For Headache & Migraine Patients), awareness of headache diseases was elevated.
U.S. Pain hosted two interactive web events, which can be viewed by following the links:
- “Overcoming a brain in pain: Advice from migraine strategist Lindsay Weitzel, PhD,” and
- “What migraine doctors and patients can learn from one another: A conversation with Abby Chua, DO, and Katie Golden.” (Must register to view)
Ambassadors worked to obtain proclamations from their local governments to recognize June as National Migraine & Head Awareness Month. U.S. Pain also helped promote Shades for Migraine, attended the Danielle Byron Henry Foundation’s “Shine Her Light” event in Salt Lake City, and participated in two of Chronic Migraine Awareness, Inc’s “Fact-A-Day” social media posts, and partnered on the start of their newest program, Triage Kits.
Pain Awareness Month, recognized annually in September, is just two months away! The theme this year, #LetsTalkAboutPain, is about the power of sharing patient stories and experiences. More details about how to get involved with U.S. Pain’s “Storyathon” campaign will be available in the coming weeks.
In the meantime, U.S. Pain volunteers are encouraged to get involved with annual initiatives to raise awareness: obtaining proclamations from state and local governments and asking landmarks and buildings to light up in blue on Sept. 13 for Shine Blue for Pain (formerly Light Up the Landmarks). Participation in these campaigns requires advance preparation, so volunteers are urged to get started now.
On June 14, Becoming Incurable, a U.S. Pain-sponsored documentary, premiered to a sold-out crowd of more than 200 people in Sacramento, CA. Directed by Victoria Suan, the film portrays the complex lives of three individuals living with severe, chronic illnesses and how their worlds completely transformed as soon as their illnesses began.
The film is especially important to Suan, as her cousin, Leo Suan, is one of the three individuals profiled in the feature-length film. In fact, seeing his abrupt transformation after his dystonia diagnosis began was the catalyst for the film. Sofia Webster, who lives with Lyme disease, and Charis Hill, who lives with ankylosing spondylitis, are also featured in the film. Suan wanted individuals to see how drastically and quickly an individual’s life can change as a result of severe chronic illness.
Migraine, headache, and cluster diseases affect more than 38 million Americans. To increase understanding and empathy for those with these disorders, U.S. Pain Foundation and CHAMP (the Coalition For Headache And Migraine Patients) need your help during National Migraine & Headache Awareness Month (#MHAM). The theme this year is #SowingtheSeeds.
MHAM began June 1, so jump in as soon as you can! You can get involved in the following ways:
But why is that? And how can you figure out which medications work well for you?
Dan will talk about the science of how medications work in the body, why we react differently to them, and how pharmacogenetic testing can help.
U.S. Pain Foundation has partnered on a survey with Tamadé, a Virtual Reality (VR) company that has developed a program for chronic pain, to learn more about how pain impacts your life and how VR might help.
The survey takes approximately 20 minutes to complete. Everyone who takes it will be entered to win one of 30 $10 gift cards to Amazon. (Remember to use Amazon Smile, which automatically donates 0.5% to a charity of your choice, if you win!)
Full name: Nancy Harris Bonk
City & state: Buffalo, NY
Pain warrior role: U.S. Pain advocate since 2014
Type of health conditions: Migraine disease, intracranial hypertension, fibromyalgia to name a few!
Favorite tip for others with chronic pain: Living with migraine, a neurological brain disease, can be overwhelming and frustrating but, accepting our diagnosis is important and doing so enables us to become educated and empowered patients!
The National Organization of Rare Disorders’ (NORD) yearly Rare Disease Day will be observed on Feb. 28, 2019. Rare Disease Day is an annual celebration the 25-30 million Americans living with one of the over 7,000 rare or orphan diseases. One in ten Americans suffers from a rare disease, a disease affecting less than 200,000 people.
This year’s campaign, “Show Your Stripes,” calls for the rare disease community to proudly dawn stripes on Rare Disease Day. Patients with rare diseases are sometimes referred to as “zebras.” The term comes from the aphorism coined in the late 1940s by a clinician who instructed his medical interns: “When you hear hoofbeats, think of horses not zebras,” meaning that they should consider the most likely or common condition when diagnosing patients. With rare disease patients, however, clinicians must think of more rare conditions, or zebras.