Twenty-six-year-old Erica Thiel, of Juneau, who was diagnosed with a rare and painful congenital disorder - Mucopolysaccharidoses (MPS I Scheie SX) - five years ago, was recently selected by the American Pain Foundation to serve as Wisconsin's Power Over Pain Action Network leader.
"Through my role as a Power Over Pain Action Network leader, I want to be able to provide resources and support for other people who are suffering with pain and give them the necessary information to become their own advocates," Thiel said.
"(Thiel) is an inspirational young lady who is making a difference in her community," said Tina Regester, communications manager for the American Pain Foundation. "As communities across the country celebrate September's designation as Pain Awareness Month, Erica has plans to bring pain to the forefront in Wisconsin."
As part of this new volunteer and leadership position, Thiel attended a three-day pain advocacy training summit earlier this summer in Minneapolis, Minn. In this role, Thiel will work on local, state and national levels to implement action-oriented public awareness, education and pain policy improvements.
"We are so pleased to add Erica's leadership to our national grassroots network of pain advocacy volunteers," said Mary Bennett, Director of Advocacy for the American Pain Foundation. "Many pain advocates have played a central role in raising awareness and advancing federal legislation such as the 2009 National Pain Care Policy Act."
According to Bennett, the National Pain Care Policy Act is designed to address many barriers to proper pain management by improving pain care research, education, training, access, outreach and care.
"The Power Over Pain Action Network leaders are making a difference, and I truly believe Erica will make a tremendous impact on bringing pain and issues surrounding pain to the attention of her community," Bennett added.
Over the last three years, Thiel has endured the painful and often lengthy recuperation from having seven surgeries to repair the damage to her body from MPS I, including c-spine decompression, shunt placement and revision, hernia repairs and intra-cranial pressure bolt studies. After finding a local pain specialist who uses a multi-modality approach to managing pain, Thiel has learned to function with daily pain caused from muscle spasms, joint tightness, spinal disease, headaches and carpal tunnel.
"In my opinion, pain does not discriminate and it affects people of all races and economic status at all stages of life - from our very young to our elders, Thiel said. "When treated properly many people can resume their daily lives. I am living proof of this. ... Having experiences pain all through out my life to varying degrees, I know how important an adequate understanding of pain is and how wide-spread mis-information on pain is. Treating patients who are in pain and finding the root of the problems versus telling patients there is nothing that can be done and that they must learn to live with their symptoms is inadequate and irresponsible in my opinion of our medical society. Thankfully I have, through hard work, found a great pain management specialist, and I firmly believe all patients desrve the same."
Thiel was inspired by the quote "Life is a journey with a past, present and future, but for now all we have is today" and is looking forward to bringing a new, unique voice to the pain movement through her advocacy work. Thiel participated in a radiothon interview for Children's Hospital of Wisconsin on Aug. 13, explaining how critical it was to find a diagnosis to MPS to begin treating the disorder and finding effective pain treatment. She also will share information on activities she has planned to raise awareness on pain during the month of September, Pain Awareness Month.