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Mar. 17, 2016

TOPIC: Patient Stories

Tougher than an NFL Football Player

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.

Brenda and New Orleans defensive tackle, Sedrick Ellis during one of Brenda’s physical therapy sessions.

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.

6 Responses to “Tougher than an NFL Football Player”

  1. Jessica Brothers says:

    I am so glad I found this article, last year I tested positive for the HLA-B27 marker and all the doctors I have seen treat me like it’s a joke. They keep telling me that I have Fibromyalgia and won’t even help with the pain or anything. I need direction on where to turn with my disease. I have been sick for over six years and currently I have been having issues with my vision and ears…any insight to any of this would be greatly appreciated

    • Brenda Fregger says:

      Hi Jessica, I’m sorry you’ve been dealing your illness with no help from doctors who don’t understand. Your story is sadly so common, it takes several years and several Dr’s before we find the right diagnosis. It took 4 Dr’s and 5 years before I was correctly diagnosed. Look for rheumatologists, this is their field! I wish you all the best of your medical journey and hope you find the right Dr. Please feel free to contact me any time. Brenda

  2. KMP says:

    I’m curious about your treatment and health regimen? Are you still waiting to find drug therapies that work? How long did it take you to get a diagnosis? Was it a specialist that finally diagnosed you? How did they rule out seronegative rheumatic diseases?

    • Brenda Fregger says:

      It was a rheumatologist who diagnosed me, I saw 4 Dr’s before I found the right one (I’ve been with the 5th Dr for over 10 yrs now!) and the right treatment. It is the family of a seronegative, but an extremely rare form of a HLA B27 autoimmune disease. I take methotrexate, simponi and plaquenil. I’ve been fairly stable since being on Simponi, It was a stem cell transplant in my knee that I was waiting for, I had that done in Nov, 2015 and I’m thrilled with the results! My knee is still far from “good”, but is SO much better!! I work out everyday, cardio, weight training and will start swimming again as soon as my shoulder heals (not disease related, a car accident)! I work full time and help take care of my 7 yr old grandson. My life is busy, active, full and happy!! I don’t have the time or patience to let my disease control my entire life!

  3. TJ says:

    I live with a rare spinal cord disease known as Syringomyelia. Thus, I am in Constant Pain. After reading above, I am wondering if perhaps I have something else as well. Do you get tested at 23 and me.com…??? If not, please tell us where and how to go about it. What is the cost. My sister was also diagnosed of having MTHFR Genetic Mutation, which I could have. Just know I need to feel better and get the appropriate care I desperately NEED!

    • Christina Jensen says:

      TJ,

      Thank you for writing. To receive more information related to Syringomyelia, please connect with one of our member organizations, Worldwide Syringomyelia and Chiari Task Force (http://www.wstfcure.org/) or American Syringomyelia & Chiari Alliance Project (asap.org). You can also look into the Undiagnosed Diseases Network (UDN) to look further into your undiagnosed condition. https://undiagnosed.hms.harvard.edu/

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