Raising neuropathy awareness is important to me. It is very frustrating to explain my disease to everyone I speak with...
New York, N.Y. (PRWEB) August 13, 2013
Neuropathy patients and their loved ones joined The Neuropathy Association on August 12, 2013 to visit the New York Stock Exchange (NYSE) to raise awareness of the growing neuropathy epidemic.
18 year-old Michael Rothman, a patient with neuropathy, rang the Closing Bell on behalf of the over 20 million people living in the U.S. with neuropathy and neuropathic pain. Michael was joined by patient advocates and volunteers, Neuropathy Association leadership and staff, as well as family, friends, caregivers, and healthcare professionals representing others in the neuropathy community. Present were:
- Michael Walter – a patient advocate with diabetes and an autoimmune neuropathy as well as a support group leader;
- Michael Rothman – a patient advocate with CIDP (chronic inflammatory demyelinating polyneuropathy);
- Rachel Rothman – Michael Rothman’s sister;
- Howard Rothman – Michael Rothman’s father;
- Angela Macropoulos – a caregiver for a family member with neuropathy;
- Howard Sander, M.D. – a member of The Neuropathy Association’s Medical Advisory Committee;
- Maria Cooper Janis – an advocate and volunteer (and daughter of film legend Gary Cooper);
- Michelle Cassuto – a volunteer;
- Jonathan Bergman – a volunteer;
- Julie Vallely – a volunteer;
- Tina Tockarshewsky – President and CEO, The Neuropathy Association;
- Natacha Pires – Director of medical and public affairs, The Neuropathy Association; and,
- Paul Guidos – Director of operations, The Neuropathy Association.
“Raising neuropathy awareness is important to me,” shared Michael Rothman. “It is very frustrating to explain my disease to everyone I speak with, and I know other patients with chronic inflammatory demyelinating polyneuropathy (or CIDP, an autoimmune form of neuropathy) – and neuropathy in general – feel the same.”
Neuropathy, or “peripheral nerve damage,” impacts at least 1 in 15 adults and children in the U.S., making it one of the most common chronic diseases and a leading cause of adult disability. Neuropathy disrupts the body’s ability to communicate with its muscles, organs, and tissues. Symptoms can include numbness, tingling, weakness, and pain often beginning in the hands and feet. With early diagnosis, it can often be controlled and quality of life restored. If ignored, symptoms can intensify to loss of sensation, weakness, unremitting pain, and/or disability.
Of the over 100 known types of neuropathy, diabetic neuropathy represents over a third of all neuropathies, making diabetes the leading cause. A third of neuropathies are “idiopathic” (unknown cause). Other neuropathies include autoimmune-related, hereditary, cancer or chemotherapy-related, entrapment or trauma-related, and neuropathies related to causes such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases (including Lyme and HIV/AIDS).
“Neuropathy crosses all borders, cultures, and ages… and its prevalence is growing at an alarming rate in the U.S. and abroad,” noted Tina Tockarshewsky, president and CEO of The Neuropathy Association. “This is truly a historic day for our community. Ringing the Closing Bell rings in a new level of awareness for a severely under-recognized epidemic. However, it should also sound an alarm that we can no longer disregard neuropathy’s devastation on people’s health and quality of life as well as the economic toll it is taking. We must do more to bring help, improved care, treatments, and cures to the millions suffering with this progressive and potentially debilitating illness for which there are no cures.”
About The Neuropathy Association
Founded in 1995, The Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support, education, advocacy, and the promotion of research into the causes of and cures for peripheral neuropathies through its nationwide network of members, regional chapters, 15 medical Centers of Excellence, and 150 patient support groups. To learn more, visit http://www.neuropathy.org.