Brittney’s Story

Brittney Bailey is a Lupus Warrior who has faced many health problems. Around age 13, she noticed that her toes were constantly numb and drained of color. Then, they started turning purple and felt painfully cold. Brittney’s pediatrician told her she had Raynaud’s and referred her to a Rheumatologist who went on to order some blood work. When the lab tests came back, they showed a lot of abnormal results. Brittney had just turned 16 when her healthcare team told her that it might be lupus. Since she received her systemic lupus erythematosus (SLE) diagnosis, Brittney has faced many additional health issues. Throughout the years, she has been diagnosed with mixed connective tissue disorder (MCTD), inappropriate sinus tachycardia (IST), postural tachycardia syndrome (POTS), Sjögren’s syndrome, myositis, vasculitis, fibromyalgia, hypothyroidism, and interstitial lung disease (ILD).

Getting Involved   

Brittney first got involved with the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) in 2011. After years of regularly attending lupus gatherings, support groups, educational programs, and fundraising events, Brittney wanted to do more to help her fellow lupus patients. She had already proven herself to be a committed supporter of the LFA and its mission by being both a donor and a superstar Walk to End Lupus Now® fundraiser. In August 2021, Brittney continued going above and beyond when she began working with the LFA, GOC as a trained patient navigator.

Health Struggles

A few months ago, Brittney was diagnosed with pancreatic neuroendocrine cancer. According to the American Cancer Society, endocrine cells in the pancreas are found in small clusters called islets (or islets of Langerhans). These islets make important hormones like insulin and glucagon (which help control blood sugar levels), and release them directly into the blood. Pancreatic neuroendocrine tumors (NETs), sometimes referred to as islet cell tumors, form in the endocrine cells. This is more rare than tumors of exocrine cells, and it was estimated that only 4,300 Americans would be diagnosed with pancreatic NET in 2022.

In November, Brittney underwent a pancreaticoduodenectomy, also known as a Whipple procedure. A third of her pancreas, part of her stomach, 6 inches of the small intestine, and her entire gallbladder were removed. She correctly anticipated that the already rough recovery process would be made worse by her autoimmune conditions. Brittney developed a couple post-surgery infections that led to her needing to be sedated and on a ventilator. Shortly before Christmas, Brittney had a procedure where they replaced some of her drains and removed one. When she was brought back to ICU, she was alert enough that her team of healthcare workers decided to extubate her breathing tube. Once off the vent, Brittany and her mother, Michelle, were able to talk for the first time in 12 days. She was also able to do some physical therapy to help her painfully swollen legs and hips while her mother read to her  words of encouragement sent by her friends and family.

Health Update

Now, Brittney has a tracheostomy tube. One of the benefits is not having to be sedated like she was with the breathing tube. However, with her now fully awake and aware of things, she’s had severe anxiety. She’s been shaking terribly for days now. They also set her up with a feeding tube due to malnourishment from weeks of living off of TPN, nutrition that’s administered through her veins. Brittany still has a couple of infections, but the doctors think that they are starting to get better. That is a definite plus, but this is still going to be a long road to recovery. She has already been in the hospital and out of work for so long. Brittney and her mom have posted on social media to thank everyone who has been sending prayer and positivity. They are especially grateful to all the generous people who have donated to her fundraising page to help her keep up with her bills.  If any readers are interested in helping her out: https://gofund.me/9e8f265

** The Lupus Foundation of America, Greater Ohio Chapter has no affiliation with Brittney’s Gofundme page, or its administration**