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.

9 thoughts on “Stronger Than I Think! Life with HLA B27 Spondyloarthpathy”

  1. 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!

  2. Beth says:

    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!!

  3. Cin P says:

    I have it also

  4. 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

  5. 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

  6. Erina Healey says:

    54 year old female, I presented with severe knee pain as a 6 yr old child which kept my mom up night after night it finally slowed down when I was 12 just to rumble back like a boomerang when I hit high school gym class was a challenge I simple hurt I hated it my mother took me into children’s hospital the doctor there said I simple needed more exercise Fast forward to after I had my first baby my back was a mess I hurt all the time I went into see a doctor and he thaught I was there seeking pain meds insulting my mother was with me and ripped into him “ this is my child and I can see the pain on her face” how dare you…. she reported him. I went 11 Years holding this inside no one to talk to the people around me whispering is she just faking this, for attention, emotional mess what’s wrong with you. It begins to damage your heart and your soul and shuts you off to life… a bit of a freak no one wants to be around as the pain eats you up. I wouldn’t wish this on anyone. It’s torture. In 1996 while carrying my son I was justational diabetic I had a lot of blood work done and there it was hla b27 positive so nothing explained and different fist fulls of meds for many years but still no explanation I ran from every field of Doctor imagenable even bullies my pcp to do a dna Genodimmer and it popped back again positive and no one wants to explain nothing distracted to the point I want to self combust he referred me back to my RA specialist

  7. Chris Buck says:

    I’ve had very similar issues as the rest of you.. The only real relief, and way to stop the damage for me was when I was tested for food allergies. If you’re not aware, its part of these auto immune diseases. Food allergies are one of the main triggers that I’ve found to date, and I’ve suffered since my early teens, and I’m 50 now still undiagnosed . I too tested HLAB27 in 1988. I believe that the bacteria that started the disease process in me was called HPylori. It was found in biopsies in 2016. Everyone gets it, but only SOME get sick from it.. I suspect it is the culprit in many of us.. I have experienced a plethora of issues over the past 35 years, gastritis, duodenitis, colitis, celiac, hyperthyroidism, prediabetes, hbp, high cholesterol, pancreatitis, liver issues, total deafness, vision issues, sleep 3 hrs a night, uveitis, iritis.. The list goes on. However, about 80% of these issues slowly disappeared with food elimination. Wheat,dairy,eggs,mustard, cashews, pistachios, sunflower seeds. One bite of any of these foods, I have flare ups that last for 2 months or longer. It doesn’t cure it all, but extends your life by stopping the inflammation in the body. It works, as my markers are 0 as long as I don’t eat these foods. Mustard causes me so much shoulder and hip pain, like swords in my joints. Roundup ready foods cause these reactions as well. Meridian Valley Labs in Washington state is the lab we used. Changed our lives!! Vitamin d3, b12, iron and testosterone seem to run low with these illnesses. I went to a Dr who had this stuff, taught us before he retired.. He healed thousands with this knowledge.. I shouldnt be alive.. Blessings..
    Chris

  8. What kind of pain medication works best for hlab27?

  9. Jon says:

    OK…this is such a bad disease! So much unchecked sufferinng…me 12+ years all of the above and a few more…no effective treatment…no help support or much hope… I want to know why…why cant we gene edit alter those with this disease their B27 gene..snip it out? replace it? turn it off? please someone tell me why we cant do something like that that could stop the disease. Thankyou anyone

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