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.
Location: North Royalton, OH
Pain warrior role: U.S. Pain ambassador since 2013
Pain conditions: Full body reflex sympathetic dystrophy, migraine, trigeminal neuralgia, fibromyalgia, dysautonomia, chronic fatigue syndrome, thoracic outlet syndrome, dystonia, gastroparesis, diabetes, narcolepsy, myoclonic jerks, deep vein thombosis, and neurovascular dystrophy.
Favorite tips for living with chronic pain: “I start off my support group with some advice to our newbies. I tell them and remind ourselves that we need to grieve for the old you. Most of us, especially those with debilitating injury or illness, those of us whose lives changed dramatically find it very difficult to accept these changes. To ask for help. To NEED help daily and to those who are extremely independent. LET IT GO! The quicker you do, you will have enough energy to find the NEW and IMPROVED YOU!”
Now through Nov. 2, AmazonSmile is donating 5% of all purchases back to a charity of your choice, including U.S. Pain Foundation! AmazonSmile offers all the same products, at the same prices, as Amazon.
“If you’ve ever wanted to donate to U.S. Pain and give back to our programs for people with pain–from support groups to the INvisible Project–but couldn’t afford it, this is a great, free chance to help,” says Nicole Hemmenway, Interim CEO.
City & state: Allentown, PA
Age: 42 years old
Pain warrior role: U.S. Pain advocate since 2017
What type of health conditions you live with: Fibromyalgia, Tourette’s syndrome, small fiber neuropathy, migraine disease, trigeminal neuralgia, occipital neuralgia, chronic back pain, and Raynaud’s phenomenon.
What is your favorite tip for others with chronic pain: “I want everyone to know that neither you or your diagnoses are invisible. There are people out there who understand what you are going through. If you are still undiagnosed, I urge you to not give up. There is a ton of information and resources out there that can help you and the doctors you are working with to assist you get answers.”
It’s that time of year! Nominations are now open and being accepted now through Nov. 30 for the 2018 Joselynn Badman Ambassador of the Year Award. Do you know someone who has gone above and beyond in spreading pain awareness this year? Help U.S. Pain recognize pain warriors who actively spread awareness while inspiring others to educate and empower their pain community.
Nominees must be a pain ambassador or advocate with U.S. Pain. In addition, nominations must be made by someone other than the nominee; self-nominations will not be accepted.
#PainWarriorsUnite was one of U.S. Pain’s most successful Pain Awareness Month campaigns to date! Ambassadors, advocates, and volunteers worked hard all month to create awareness on behalf of pain warriors across the country. Initiatives included the 30-Day Social Media Challenge, Daily Partner Pain Facts, proclamations, Light up the Landmarks, Beautify in Blue, awareness tables, fundraisers, and educational webinars.
The Ouchie app is successfully used by thousands of people to track and manage their chronic pain. It’s also a powerful platform for connecting with and getting support from fellow patients.
The team behind Ouchie recently created a new series that features the stories and perspectives of people living with chronic pain, including members of U.S. Pain. Download the app to learn more about members like Jason Schutz of the blog, “Ain’t No Shame in Chronic Pain,” who wrote a piece about the value of support groups. You can also find helpful tips and resources from clinical experts.
By Kerry L. Wong
When most people think of sarcoidosis, what usually comes to mind is … OK, let’s start by correcting that – most people don’t ever think of sarcoidosis at all (in fact, most have never even heard of it). Once they learn of this disease, usually because someone they know has been diagnosed, they most likely think about breathing problems. That makes sense, since 90% of people with sarcoidosis have it in their lungs. This can lead to severe bouts of pneumonia, pulmonary fibrosis (scarring), and more.