College of Nursing instrumental in Neuropathy patients’ voices being heard during Neuropathy Awareness Week

USF College of Nursing faculty, staff and students, led by Cindy Tofthagen, PhD, ARNP, AOCNP, Assistant Professor and  Oncology Concentration Director, helped provide a voice for neuropathy patients in the Tampa community during the Neuropathy Awareness Week, May 13 through May 17, 2013. USF College of Nursing students, faculty, and staff closely collaborated with the local Neuropathy Support Group to encourage the community to help raise money and create awareness for the disease.

Dr. Tofthagen, who is the member of the Neuropathy Association Neuropathic Pain Management Advisory Council, the coordinator of the Tampa Neuropathy Support Group, and a volunteer for the Neuropathy Association, worked hand-in-hand with Neuropathy Support Group Volunteers from USF Nursing including Coordinator for C.A.R.E. Data, Melissa Leggatt, USF Nursing student, Ian Loy, Associate Professor and Associate Dean, Student Affairs & Community Engagement, Connie Visovsky, PhD, RN, ACNP-BC, and others, to help Neuropathy Support Group Members get their voice heard in the local community.

“I am proud to be a part of a group of local volunteers who are committed to bringing both local and national attention to peripheral neuropathy and honored to be able to recognize the millions of people whose lives have been dramatically impacted by neuropathy,” Dr. Tofthagen said. “This past week, USF and the city of Tampa, amazed us with the incredible amount of support we received! Thank you!”

USF College of Nursing volunteers and Neuropathy Support Group members, led by Mary Busch, spear-headed communication with the City of Tampa and Tampa Mayor Bob Buckhorn to declare May 13 through May 17, 2013 Neuropathy Awareness Week in the City of Tampa. Busch and other support group members also contacted the Mayor’s Office to light up the SunTrust Bank building in downtown Tampa to honor patients suffering with the chronic illness. Their efforts helped make possible the Mayor’s Proclamation as well as SunTrust Bank’s ziggurat to light up in purple and yellow in honor of Neuropathy Awareness Week on May 5 and 6, 2013.

“This has been a wonderful experience,” said Busch, who has been suffering with neuropathy for about 10 years. “It shows to me that the local government and the community is willing to get involved to help patients suffering from neuropathy and people who are caregivers. It’s been such a rewarding experience.”

The Neuropathy Support Group is part of The Neuropathy Association, which is a national non-profit organization that helps increase public awareness of the nature and extent of peripheral neuropathy, and educate the public and healthcare providers about the disease. All the members of the Neuropathy Support Group are neuropathy-diagnosed patients.

Neuropathy is a chronic disease that affects more than 20 million children and adults in the United States, six million of whom struggle with neuropathic pain. Neuropathy Association reports that the disease impacts one in 15 Americans making it the leading cause of adult disability in the country. According to the Neuropathy Association’s website, peripheral neuropathy is a disorder of the peripheral nerves, which usually affects hands and feet causing weakness, numbness, tingling and pain.

“In my role as an oncology nurse practitioner, I see, firsthand, the negative impact on health and quality of life, that peripheral neuropathy can have,” Dr. Tofthagen said. “My involvement with the support group really opened up my eyes to the fact that it is not just people with cancer or diabetes that suffer with peripheral neuropathy. It is my desire that every patient with peripheral neuropathy be able to function at their very best and receive excellent medical treatment, education, and support. That is why I am actively involved in the Neuropathy Association and why peripheral neuropathy is the primary focus of my research.”

USF College of Nursing students, staff, and faculty voluntarily joined the Neuropathy Support Group members at Wiregrass Mall in Wesley Chapel on May 5, 2013 and again on May 19, 2013 to raise money and provide information about peripheral neuropathy.

“For anyone who is suffering from this disease can be very isolating because a lot of times you can’t get out or see other people,” Busch said. “The support group pulls people together to give comfort to each other, and that’s important. So if there’s anyone out there that is suffering from any kind of neuropathy should come join our support group and see what it is about. It does help, and it makes a difference. It really gives you information about the symptoms, doctors, and everything else.”

“I just want to thank USF, Dr. Tofthagen, Mrs. Busch and everyone who gave us the opportunity to get together and talk about different topics every week, and create a strong group that supports one another,” said Janie Kennett, who suffers with neuropathy and has had eight orthopedic surgeries to overcome the disease.

Even though Neuropathy Awareness Week activities have wrapped up, there is a continued need for people with neuropathy to obtain appropriate diagnosis and treatment as well as education and support. In addition to the resources available through the Neuropathy Association, there are also two local resources for people in the Tampa Bay community including the Tampa Neuropathy Support Group and the Supportive Care Clinic for People with Peripheral Neuropathy.

For questions or general information about the Neuropathy Support Group or the Supportive Care Clinic contact Dr. Cindy Tofthagen at neuropathyhelptampa@gmail.com.