By WARREN DILLAWAY - email@example.com
More than four years of work did not go in vain for Conneaut resident Susan Diamond who has been pressing the state legislature to address the concerns of thousands of Ohioans suffering with a syndrome not well known to the public or the medical community.
Complex Regional Pain Syndrome has been an under diagnosed disease that affects many people, Diamond said while preparing to head to Columbus Wednesday to participate in a bill-signing ceremony she hopes will create a deeper awareness of the syndrome and its gnawing pain.
Diamond joined the fight after she did not recover from injuries resulting from a fall that left her with almost constant pain. She said the syndrome was not immediately diagnosed and created a challenge for her.
Diamond was eventually asked to join the legislative fight by Bob Harris who has been trying to get legislative relief for more than six years. She also organized a variety of fund raisers and public awareness displays during the last four years.
Harris, an Akron area resident, said he realized it would take quite awhile to pass the bill, but it was an important fight because the bill will help so many people.
The bill designates November as CRPS awareness month to promote public awareness of the condition. The disease is also known as reflex sympathetic dystrophy syndrome and usually occurs after some kind of soft tissue damage to some portion of the body or following surgery, Diamond said.
The bill also mandates that the Ohio Department of Health place information on their website related to the syndrome.
“CRPS is thought to be a neuropathic pain syndrome that generally occurs at the site of a minor or major trauma injury, but may also occur without an apparent injury,” the bill states. It also indicates the cause is unknown, but the peripheral and central nervous systems are involved.
The syndrome can quickly spread to an entire limb with the potential for irreversible damage if not treated in a timely fashion, the bill states.
The legislature agreed it was important to place information on the website because a delay in the diagnosis or treatment of CRPS can result in severe physical and physiological problems, according to the bill.
The bill passed the State House, but was delayed in the State Senate until it was finally passed on Nov. 27, Diamond said.
She said it was great to receive help from State Senator Capri Cafaro and State Representative Casey Kozlowski. The two legislatures are on opposite sides of the aisle with Cafaro, a Democrat, and Kozlowski a Republican.
The legislators were able to step across the political divide to support the bill and help make it a reality. Diamond said the two legislators set a good example by working together.
Diamond said she requested, and received, a hearing before the Ohio Department of Health and then urged the state epidemiologist to help raise awareness of the syndrome to physicians around the state.
She said several people who suffered from the disease, one who lost a limb, were able to testify at senate hearings relating to the syndrome which helped get the bill through the legislature, she said.
Diamond was not able to attend the hearing as she was having surgery to remove “hardware” from the limb that was affected by CRPS.
“Doctors and nurses gathered around my hospital bed, post surgery, and marveled at the sight of the one legged paramedic going to fight for me and himself, for thousands of Ohioans in severe burning pain,” she said.
Diamond also helped create a support group for Ashtabula County residents suffering with the syndrome.
“The problem is education of the medical community and public awareness,” she said.