Mar. 17, 2016
TOPIC: Patient Stories
Posted by Emily Fishman
“That would have been the easy way, but I chose to fight every step of the way!”
Although Brenda Fregger was born with a rare genetic marker called HLA B27, it was not until she was forty years old that this gene was discovered. Since the gene does not show any effects until it is activated by an infection in a separate part of the body, Fregger was able to live a normal life up until then. A local physician diagnosed Fregger at age forty-two with a very rare autoimmune disease called “Orphan of rare HLA B27 Spondyloarthpathy,” and she immediately searched the country for physicians with any expertise. This disease causes immense joint pain and attacks the body’s soft tissue and cartilage, causing severe inflammation and immense pain and degeneration of the joints, eyes, ears, and intestines. Unfortunately, numerous orthopedic surgeries proved little help and her search for answers came up short. Physicians that she did see could only offer her narcotics and antidepressants, since there are no approved treatments available. It was at this time that she was told she would be wheelchair-bound by age fifty.
Fregger did not surrender to this life sentence of misery. Instead, she battled back by committing herself to a rigorous daily workout plan of swimming and Pilates. Alongside physical therapy, she has tried countless “high-risk” drugs and experimental procedures. With the help of great physicians and therapists, she remains hopeful for the therapies that lie ahead. When Fregger thinks that she cannot handle this disease anymore, she thinks back to her physical therapy session alongside the retired New Orleans Saints defensive tackle, Sedrick Ellis, where she endured the same exercises while the professional athlete complained. Brenda Fregger will not give in to this disease and, even though she may not be able to control it, she can choose how she lives with it. She will always know that she is tougher than an NFL football player.
For more, please visit the Reactive Arthritic Rare Disease Database. Read more patient stories on NORD’s website and learn how to submit your own here.