Rehab technology suppliers create seating and mobility systems for clients with a wide range of medical conditions. So they are aware that certain diagnoses are more common than others. But what makes a medical condition truly “rare”? How often, for instance, might you expect to see a client with a diagnosis of Brown-Sequard Syndrome?
The non-profit National Organization for Rare Disorders (NORD) says a rare (also called an “orphan”) disease affects fewer than 200,000 people in the United States. There are 6,000 such rare disorders, but don’t let their individually tiny numbers fool you. NORD says that when you add together the number of people with rare conditions, the total is approximately 25 million!
Here’s another possibly surprising fact: When Congress passed the Orphan Drug Act of 1983 to encourage pharmaceutical companies to develop medications to treat rare conditions, it considered muscular dystrophy and Amyotrophic Lateral Sclerosis (ALS) to be rare by virtue of the number of known cases in the United States. So some conditions and disorders that may seem relatively common to the RTS or PT/OT specializing in seating and mobility — including cerebral palsy and spinal muscular atrophy — are, statistically speaking, considered rare.
NORD’s mission is to help people affected by those rare conditions, in part by acting as a clearinghouse of information. Its Web site (www.rarediseases.org) includes a database of more than 1,000 rare diseases and disorders, an index of support organizations and research reports. It’s a good place to start looking for information, especially when that once-in-a-career client appears at your door.
By the way: NORD says Brown-Sequard Syndrome is defined as damage to one side of the spinal cord caused by a lesion and often preceded by an injury to the back or neck. The results are weakness, paralysis and/or some loss of sensation below the point of injury. The e-medicine.com Web site adds that Brown-Sequard Syndrome is seen in 2 to 4 percent of new spinal cord injury patients each year.
