Many have heard of cancer, muscular dystrophy or multiple sclerosis, but few, including clinicians, have heard of Reflex Sympathetic Dystrophy (RSD), a neurological disorder. The syndrome is not common, and the obscurity doesn’t help to raise funds.
As a result, one family is setting out in Rockford to be virtual walkers of the 10th Annual Achilles Walk for Hope & Possibility to benefit the Reflex Sympathetic Dystrophy Association. The walk will be at 2 p.m., Sunday, June 24, at the Rock River Recreation Path.
Team Niki’s RSD Advocates will start the charity walk in front of the Nicholas Conservatory. One member of the team has been disabled by the disorder since 2010. Her family, including their 9-year-old daughter, will be walking in support of Niki Hall as a mother and student who suffers from RSD.
But what is this rare disorder, and what causes it? Reflex Sympathetic Dystrophy is a rare neurological disorder initially caused by an innocuous injury, such as a sprain or deep cut. During the healing process, suddenly the body’s immune system is triggered as well as the brain’s alert system around the injury site and other nearby limbs and areas.
RSD causes progressive symptoms, such as severe sensitivity to touch and edema, as well as severe pain and motor dysfunction.
There are no answers as to what causes it or even the best ways to treat it. Treatment options are sparse, and many neurologists turn away RSD patients because of their lack of knowledge about the disorder, thereby inhibiting their ability to treat the patient.
Hall is being treated by a neurologist in Chicago and is struggling to get her medications covered by her insurance. She developed the syndrome after a simple heart surgery to remove a benign cyst. She has lost fine motor skills in her upper right torso and arm, including her dominant hand. She is slowly learning how to write with her left hand, and through accommodations, she has been able to maintain a 4.0 in the two years she has attended Rock Valley College as a full-time student.
To learn more about Hall’s story and how to donate and sponsor the family’s charity walk June 24, visit www.firstgiving.com/fundraiser/nikihasrsd/.
From the June 20-26, 2012, issue