Breon Barnett-Green seeks help to treat rare disease
Imagine having chikungunya (chik-v), only to discover that your ailment is far worse than you could possibly fathom. This was the case for Breon Barnett-Green, who was told weeks later that she also had rheumatoid arthritis. Her nightmare wouldn’t stop there as that misdiagnosis led to doctors confirming that she has a rare illness called ankylosing spondylitis.
“Ankylosing spondylitis is an inflammatory disease that causes some of the bones in the spine, called vertebrae, to fuse. This fusion makes the spine less flexible and can result in a hunched posture. If ribs are affected, it can be difficult to breathe deeply. It also causes inflammation in other areas of the body when it’s at an elevated stage,” she told Lifestyle.
During her days of chik-v, Barnett-Green recalled being unable to walk and feeling pain everywhere, particularly in her back. “It felt like something had hit me or like a bone snapped based on how painful it was. Weeks later, I was fine. Then one day my feet started to feel numb whenever I would walk and I would feel tired and fatigued. Pain started to come in every joint, neck, hands, knees, ankles, lower back and especially the hips.”
17 pain pills daily
Barnett-Green’s concerned mother took her to the hospital to see what was wrong and it was at that point that it was suggested it could be rheumatoid arthritis. Placed on at least 17 pain pills daily just to get by, the pain only exacerbated, so too did her mood, and she had developed a stomach ulcer, so it was obvious that something was wrong.
Several tests later, it was revealed in 2019 that she had a rare disease called ankylosing spondylitis, “Ankylosing didn’t only give me severe pains, it is such a terrible disease that causes eye issues and breathing issues. I was diagnosed with asthma and I also developed eye issues which now has me wearing glasses and also pending possibly surgery for cataract in my eye.”
No processed foods
She has undergone a change in the way she eats, taking tomatoes, oranges and even stewed beef out of her diet. “I have to cut all foods that are acidic, inflammatory or fatty. No red meat, no fast food, no excess sugar and no processed foods. This has caused grocery bills to rise as healthy foods, the ones I actually should [eat], are really expensive,” she pointed out.
The cost also factors tremendously when it comes to the medication. “I received help from the Ministry of Health through their purchase of six months dosage of this injection for me. These dosages have been finished and for now, I’m only on 12 pills per day to help with the pain as I’m unable to find this medication which is for roughly $350,000 monthly. I have to live on this medication for at least two full years so the doctors can see how best it is helping my condition and how damaging it is to my body.”
Then there is the case of bullying. She is often mocked about the way she walks by onlookers who are unaware of her illness. “If I want to go from point A to B, I’d have to take medications and wait an hour or so until said medication begins to work so I can move. I can’t sit for too long. Standing up is incredibly painful and I can’t stand for too long, I can’t walk for any long distance, I can’t run, I can’t bend and touch my toes or even ankles, I can hardly bend to touch my knee because of my back pains. This alters how I do housework, how I live daily, how I seek jobs, how I function in life overall,” Barnett-Green highlighted.
Despite the ridicule, financial hardship and constant pain, she maintains a positive outlook and remains hopeful that things will get better sooner rather than later. “As a Christian, I sometimes don’t even remember that I have so many illnesses; I also have endometriosis, [but] because of how much I occupy myself worshipping, I sing often, I listen to music which helps to get me in a worshipping frame of mind and less depression. I have God and God gives joy and hope,” she said, adding, “I am filled with potential and I possess a host of skills, knowledge and talents and so I use those daily to make myself happy. I’ve accepted that I have this disease and so there is only the option to live with it and acceptance, though at times [it] depresses me immensely, it really allows me to stay positive knowing that I just have to live my reality.”
It also helps that she has a wonderful support system of her mother, father, husband and church.
“My support system has been my mom, my dad, and my husband. My church family also has been so supportive with prayers and with visits and calls throughout my journey with this illness. But my mom? I wish I could give her the world. My very loving and praying mother is a woman filled with compassion and love for me. I’ve seen mommy’s faith, I’ve seen answered prayers, I’ve seen her miss work, lose sleep, go hungry, I’ve seen her cry, I’ve seen her break down, she even got a stroke once, all in trying to make me feel happy and in ensuring that I’m okay. She has been there, she has always been there and there is nothing in this world I wouldn’t give for her to be happy just because of how good she has been to me. Mommy not only helps physically with everything but mentally and spiritually too. She is just always positive,” she shared.
For Barnett-Green, there is no surgery as there is no cure for ankylosing spondylitis. There is only treatment which comes in the form of an injection called Embrel (etanercept). Taken once daily, it is used to reduce the symptoms to prevent a person from being paralysed and help with removing the inflammation. “It’s very important to spread awareness for ankylosing because of how rare this disease is and how life-threatening it can be. To know that you can become crippled in a matter of hours if not treated for a condition like this is terrifying and so it’s very important for it to be highlighted and addressed,” she asserted.
A GoFundMe has been set up by her husband, Rosano Green, to raise funds for his wife’s incurable illness. It has raised US$730 of the US$100,000 goal. Visit www.gofundme.com/f/donate-to-urgently-assist-with-breons-medication to donate.