Ohio: Testimony in support of SB 216
Franklin County Commissioner Marilyn Brown
and Franklin County Probate Judge Eric Brown
I am Franklin County Commissioner Marilyn Brown, and this is my husband, Franklin County Probate Judge Eric Brown. We are here today, not as elected officials, but rather in a far more important role, that of parents. We are the proud parents of two wonderful adult daughters. Because our younger daughter has a serious medical condition known as Reflex Sympathetic Dystrophy (RSD), we have learned a great deal about the condition, and we are here to support the legislation before you this morning.
We thank Senator Strahorn and the co-sponsors of this bill, and we thank the members of this committee for your time and consideration. We urge passage of Senate Bill 216. We strongly believe that early detection of RSD can lead to better treatments and outcomes for those who suffer, sometimes unbearable pain and disability.
Our daughter, Daryn Brown, sprained her left wrist when she was 18 years old, during the summer before she started college. She promptly saw an orthopedic surgeon who diagnosed a sprain and ordered a standard course of treatment.
After a couple of weeks with no improvement and a dramatic increase in pain, we took her back to the orthopedist to recheck her wrist. Still believing the injury was a simple sprain, he referred Daryn to a hand therapist for physical therapy. Fortuitously, this hand therapist had once attended a workshop about Reflex Sympathetic Dystrophy, and when she saw Daryn, she immediately believed Daryn had signs of the condition. One of the presenters at her workshop was a local pain management anesthesiologist who was treating patients with RSD, and he was willing to see Daryn. So began Daryn’s journey into the world of RSD, a medical condition, sometimes referred to as Complex Regional Pain Syndrome (CRPS).
Daryn is now 31, and for nearly14 years, she has lived and worked with RSD. For her, this has meant periodic flare ups where she has excruciating pain and disability. Her hand and wrist contract tightly and swell, turning bright red and sweating profusely. She has described the pain as a burning, crushing pain that even a small drop of water or wisp of breeze feels as though an elephant has crushed her hand. Her hand clenches and will not open until the flare-up is gone, sometimes weeks or months later.
At times, even though she never otherwise injured her right hand or wrist, she has inexplicably had symptoms there. Sometimes, she has had a flare up in both hands at the same time, leaving her with little ability to shower, brush her teeth, dress, or eat.
Despite the RSD, when in remission, Daryn is a very successful professional stage manager and event planner in NYC, where she has lived and worked since graduating college. As her parents, we are ever aware that at any moment, with or without a triggering event, she can have an RSD flare up in one or both hands.
Daryn has managed her active life while attending to hundreds of doctors appointments and countless medical procedures. Treatments have ranged from numerous nerve blocks in her neck and under her arms, to the surgical implantation of a spinal cord stimulator, which her body soon rejected. (It literally popped out.) Daryn has treated with ketamine, where sleep is induced for a few days or a week, although she has not reached the desperation of some or her friends with RSD who have travelled abroad to treat with ketamine-induced comas.
Last year, Daryn had a medication pump installed in her abdomen to infuse baclofen continuously and directly into her spine. Because the installation of the pump was a surgical procedure involving trauma, it caused the RSD to migrate to the surgical site. Now, every three months when Daryn needs to have the pump refilled with medication, the needle prick alone causes an intense flare up of RSD at the injection site. So far, she and her doctor have not found a solution to this pain.
Daryn has been fortunate in that she found an excellent specialist to lead her treatment and care, and other experts with whom to consult. And, unlike many of her friends with RSD, she has managed to work productively and continuously in her career. Of course, continuing health insurance coverage remains essential for her, since her necessary medical treatment and medications are quite expensive.
The bill you are considering will help bring awareness to medical professionals about RSD and the importance of early detection and treatment. This bill will help the public to begin to understand the serious nature of RSD and that individuals can make informed decisions about their own health and well-being.
Thank you for you time. We would be happy to answer your questions.
January 12, 2010