Community

THE IMPORTANCE OF HEALTH COMMUNITIES; Medical Research Groups, Patient Advocacy Groups, & Patient Support Groups

By Barby Ingle, Columnist  

In 1995, I became the head coach for the Washington State University’s Spirit Program and a successful business owner. I was very athletic and health conscious. In 2002, I was in a minor car accident, which developed from a whiplash and brachia plexus injury into Reflex Sympathetic Dystrophy. I lost my job, marriage and sense of worth. I was finally diagnosed in 2005 after seeing over 40 providers, undergoing multiple major surgeries and complications including 5 pneumothoraxes (one being a full collapse) and bad medication side effects and was using an electric wheelchair. By 2007 I had full body RSD and had tried no less than 20 treatment options to control the symptoms of RSD. Since September 2002, I have been seen by over 100 healthcare professionals and have had over 50 surgical procedures requiring varying levels of anesthesia.

The good news is in December 2009, one year ago, after undergoing a 7-day inpatient IV-Ketamine infusions in an intensive care unit I went into “remission”. I underwent infusion therapy. I went into the hospital in a wheelchair with severe 9-10 level pain and walked out 7 days later practically pain free. Since then, I have undergone additional booster treatments on an outpatient 2-day protocol to hold the effects. I have been in and out of remission and controlling my health and pain levels is an everyday need. I credit the pharmaceutical companies and my doctor for creating this medication and the protocol used to put me in remission allowing me to be here today, doing this well.

Currently I serve as the President of International Pain Foundation, which is a 501(C)(3) charity. The International Pain Foundation believes in patient empowerment, patient advocacy and partnering with other organizations and groups to make a larger impact when our goals on a project or topic align.

We encourage Patient Empowerment by making available the resources and tools to help patients become the “chief of staff of their medical team”. Through our patient and caregiver education and mentoring programs we raise support for chronic pain patients, with a focus on those with neuropathy pain. The goal is to provide resources for chronic pain patients increasing their ability to perform regular activities in their community.

Our patient advocacy is accomplished through educating those afflicted with pain conditions, their families, friends and healthcare providers on the disabling pain it causes. We promote public and professional awareness of chronic pain conditions and patient rights through collaborating with support organizations and businesses. As we bring new programs to the pain community, and sometimes partner with other groups, we provide action-oriented public awareness, education, and pain policy improvement through these activities and efforts to eliminate the under treatment of chronic pain. This allows us to bolster society’s ability to provide full opportunities and appropriate supports for its pain citizens.

Support and medical organizations’ working together is the ideal situation when making a large impact on policy improvements. Self help groups and support organizations working to improve policies that affect their members usually lack the funding that medical organizations have available. Exploring and collaborating on similar areas of shared interest can bring together the larger picture on how policies are affecting its members of society on financial, social, and individual levels.

When trying to change policy or practices that have been long established, an organized group backing the idea shows the importance of the issue from multiple arenas. Policy makers and insurers are more likely to take notice, listen, and be pushed into taking appropriate action.

Through our independent projects and collaborations with organizations such as Pain News Network, Pharmaceutical Companies, Corporations, Durable Medical Equipment companies, and other interested parties have brought the issues of access to proper and timely treatments, patient rights and disease specific issues into the spotlight, through collaboration of TV interviews, informational distribution practices and in person events.

Our collaborations have been done through projects such as the television interviews on Step Therapy, written educational pamphlets and information on medications and disease specific conditions distributed at our free public awareness events, webinars and expos. And, support for public events where people would not necessarily know about their rights and the resources available in their community. Two of our major in person events are Pain Awareness Day At The Park and Comic Pain Relief®.

For Pain Awareness Day at the Park, we also calibrated with the Arizona Diamondbacks and other support organizations from Arizona, reaching a crowd of over 30,000… as part of the National Pain Awareness Month Activities. We were given an on-field presentation and two exhibitor stations, where attendees can stop by to pick up resources and literature. Pre-and post-event media is utilized in putting these access to care pain issues in the spotlight.

Our other major event is Comic Pain Relief. This is our foundations signature in person event to raise funding to complete our projects throughout the year such as free public awareness events including symposiums and expos, where we teach patients the tools necessary to be self advocates, improve their care, and find community resources that can give them a better quality of daily life.

Our largest online event is NERVEmber™. This event is officially used to represent Neuropathy Awareness Month, RSD, Reflex Sympathetic Dystrophy, CRPS, Complex Regional Pain Syndrome, and Diabetes Awareness Month (November) by the International Pain Foundation. The word NERVEmber™ for this purpose was created by Barby Ingle in Oct. 2009. These awareness activities all started as back in 2007 by the International Pain Foundation, a 501(c)(3) charity. As the neuropathy community and nerve pain awareness movement grew, the awareness activities increased and grew into Nerve Pain Awareness Month or now commonly referred to in the pain community – NERVEmber. The NERVEmber™ brings awareness to the 150 plus conditions that have nerve pain as a symptom. The International Pain Foundation host the OFFICIAL NERVEmber project events each year. Since its inception, millions of have signed on to help promote and participate in the NERVEmber activities. During the month of November, many people throughout the world come together for the nerve pain community. Events are held. Articles are written. Facebook statuses are updated. Instagram photos are posted. Videos are created and spread online. Proclamations are issued. It is important to remember, that these are all important things that can happen throughout the entire year, not just in November.

No matter how you decide to get involved with your conditions outreach, advocacy and awareness activities I hope that you see the importance of sharing your story, raising awareness and making a difference in the lives of others going through similar challenges. With all of the new changes in healthcare, insurance, and access to care coming down the pipeline it’s going to be even more important for us to each have our voice and have the nerve to be heard. Through our individual and collective efforts, we can become one united voice that is powerful and persuasive. We must come together when possible to make a difference in the lives of those living among us with chronic pain.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.