Stronger Than I Think! Life with HLA B27 Spondyloarthpathy

When I think I can’t handle anymore, this picture with Sedrick Ellis, (retired 2013) New Orleans Saints defensive tackle taken last week in physical therapy at Andrews Institute in Gulf Breeze, Fl will remind me that “I am as tough as a NFL football player!” I always try to look on the positive side of everything, even a rare, incurable disease. But sometimes things are really tough and progress is slow, but working right next to a NFL football player has given me a new outlook and a new motto: “I am as tough as a NFL football player!”

I was diagnosed with a rare, incurable autoimmune disease, now called “an orphan of a rare HLA B27 spondyloarthpathy.” It attacks all the soft tissue and cartilage as if it were foreign, causing severe inflammation, pain and damage to the linings of my joints, tendons, ligaments, meniscus, cartilage, intestines and eyes. I was born with a rare gene called HLA B27, not discovered until I was 41. This gene was exposed to a certain bacteria, which could have been something as simple as a sinus or intestinal infection, but the bacteria turned the gene into this disease. To date, I’ve had 13 orthopedic surgeries to remove diseased tissue and repair damage to various joints; and this has also caused colitis and IBD.

There are no FDA approved treatments or medications because it is so rare. It took three years and five doctors to get the correct diagnosis and find a (somewhat) effective treatment. The treatment is a chemotherapy drug once a week and a injectable biological medication once a month, along with a handful of other medications.

My medications are “high risk” and toxic with horrible side effects, pretty much the same side effects cancer patients deal with; although my chemo is a much lower dose, I’m on it for life. A “top ranked” specialist at one of the “best” medical facilities in the southeast told me the progression of this disease will put me in a wheelchair in my 50’s, I was 42 at time.

My response to him was “WHAT?! If you know nothing about this disease (which he said he’s never seen it before), how do you know I’ll be in a wheelchair?” He just shrugged his shoulders and started writing out prescriptions for narcotics and anti-depressants because “I was going to need them.”

WHAT? I thought. Are you kidding me?! Narcotics, anti-depressants and a wheelchair?? I DON’T THINK SO!!

He was extremely insensitive, so disturbingly matter-of-fact, no compassion, no concern, no feelings whatsoever. He just handed a life sentence of complete misery with shrugged shoulders and a cold face. I was furious, he was such a jerk! When I saw him, I was recovering from an ankle surgery, still using a cane; when I got to my car, I threw my cane in the back seat and never used it again!

I was determined to prove him SO very wrong, there was no way I was going to be a sick, depressed, miserable person in a wheelchair! I joined the YMCA, started swimming every day and taking pilates 3 nights a weeks. I lost weight, got stronger and healthier. And the better I felt, the more defiant I became with my disease!

My motto was “I DON’T THINK SO!” when doctors would tell me I shouldn’t or couldn’t do something because it could damage my joints, I have this defiant attitude of “Yes, I can!” And for years, I proved him wrong and now 55, I am nowhere close to ever being in a wheelchair!!

Though my road has been paved with many hurdles, surgeries, SO many injections into many joints, physical therapy, braces, crutches, canes, etc…. my defiant attitude is stronger as ever!

Currently I’m dealing with severe knee problems, torn meniscus and two severe tears in the cartilage. I am desperately trying to avoid my 14th surgery, so I’m doing steroid injections, synvisc injections and PRP, which is platelet rich plasma. They take my blood, spin out the platelets and inject them into my knee. Considered experimental, not covered by insurance and never used on a disease before. Next week, I am starting my third round of these injections. I’ve been in physical therapy since September, that’s where I meet Sedrick (he’s recovering from knee surgery).

We were doing the same exercises, he was “complaining” (well it was more like giving our therapist a hard time), our therapist said “Oh suck it up, look at Brenda, she’s tougher than you are!’ Which sparked my new motto “When I think I can’t take it anymore, I remind myself I’m as tough as a NFL football player!”

My advise to other patients is attitude makes a huge difference! It’s the difference between living in a wheelchair OR living healthy, active and happy! I have no control over my disease, but I do have control over how I live with it. That doctor could have been right… if I let him be. I could have come home, crawled in bed and waiting for the wheel chair, instead I got seriously pissed off and defiant! I’m in better shape and healthier than I have been in years. My life is happy, full, busy and active– because I want it to be.

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Global Genes Comments

  1. I to was told I have hlab27. I have uvilits also glaucoma diabetes high blood pressure I try to eat healthy that’s hard I love food. I’m like you I keep on fighting eye docs say I will go blind. I have no insurance so I have to pay out of pocket for all meds and Tristan z is z$200.00 buck alone for 0.03 oz hardly nothing. I don’t work lost most eye site in left eye and right eye vision comes and goes today I’m seeing somewhat but foggy what does a person do I’m not dying without a fight but not getting eye and other meds may just lead to that. Glad I’m going to Heaven by Jesus word

  2. Laura Bennett Stb Leeming says:

    Hi I’m 29 in England and have recently been diagnosed with hla b27 and degenerative disc disease it was wonderful to read this and be inspired I have lived in constant pain since I was 13 years old and have been very drepressed over it

  3. I have it also

  4. Brenda, thank you so much for sharing your journey. It definitely struck a chord with me. I am also HLA-B27 positive but it hasn’t presented with anything more than persistent uveitis. I am also currently battling four different autoimmune illnesses and share your pain about coming across uncompassionate doctors, which seem to be the rule and not the exception, unfortunately. Your story has definitely given me renewed hope and a drive to imitate your inspiring attitude. It’s so hard to not get discouraged by poor prognoses that doctors hand out, but I will no longer let their words sink into my psyche. Thank you.

    I am being prescribed an extremely safe, no-side effect RX from a natrupath called “LDN,” low-dose naltrexone (super cheap not under patent anymore), which balances out the immune system. It has been so beneficial and been a real lifesaver for so many who have autoimmune illnesses. Not sure if you’ll even see my comment, but I hope I can impart something to you as you have imparted to me. Keep up the good fight, Brenda, I’m rooting for you!!

  5. Mary Anne says:

    You are so inspiring. Love how you take the bull by it’s horns and tell it to “Shove it!” Miss you so much. Thank you for writing such an awesome account of your life. Watch out Michael, she’s tougher than NFL!

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