Deana Fellows suffered in silence for 18 years before she discovered the Lupus Alliance of Upstate New York.
She attended the Lupus Alliance’s “Walk Along for Lupus” in 2007 and found the organization to be full of “wonderfully embracing people.” Now, Fellows is a member of the group’s board of directors.
Diagnosed with the autoimmune disorder at age 23, Fellows, who lives in Marcellus, said she doesn’t care much to talk about her illness, but she realized that opening up about her story helps other people with lupus know they’re not alone.
The Lupus Alliance of Upstate New York was founded in 1977 for people affected by lupus in Western New York. In 2004, the organization expanded to include Northeastern New York; two years later, a branch was added in Central New York.
The Lupus Alliance provides support groups, physician referrals, educational programs, a speakers’ bureau and the “Telephone Buddy Program,” a peer counseling network that matches patients with similar health issues.
“Anything you want to ask, even if they can’t answer it, they’ll find an answer for you,” Fellows said of the Lupus Alliance. “If we can’t help you, we’ll try to put you in touch with somebody who can. We’re not going to turn our backs and give up on you that easily — that happens to us too many times.”
Lupus erythematosus is a group of incurable, chronic disorders in which the body’s immune system attacks the skin, joints and organs.
While each case of lupus is different, common symptoms include joint pain, fatigue, fever, hair loss, sensitivity to light and the “butterfly rash,” a sunburn-like rash across the nose and cheeks.
Lupus can cause damage to the kidneys (lupus nephritis), brain and central nervous system, lungs and heart. People with lupus are more prone to infections, arthritis, cancer, bone tissue death (avascular necrosis) and complications during pregnancy such as preeclampsia.
The majority of sufferers are women diagnosed between the ages of 15 and 44. Lupus is more common among people of African-American, Native American and Asian descent.
There are several types of lupus:
-Systemic lupus erythematosus (SLE) is the most common type, affecting many parts of the body, especially the joints and internal organs. SLE comes and goes in “flares” and remissions.
-Discoid or cutaneous lupus mainly affects the skin. It causes a scaly, red rash that can lead to scarring and baldness. Singer Seal has scars on his face from discoid lupus.
-Drug-induced lupus is a temporary, lupus-like syndrome caused by certain drugs for heart problems. It is more common in men and resolves when the medication that causes it is stopped.
-Neonatal lupus can appear in children born to someone with lupus. Babies with neonatal lupus may have a rash, liver problems and congenital heart block, a delay in the electrical impulse in the heart. Most symptoms of neonatal lupus resolve by age 1.
Searching for answers
Before her diagnosis with lupus, Fellows struggled to find answers for symptoms that began with her son’s difficult birth. She was 20 years old, and pain in her arms and hands grew so severe that she couldn’t carry out daily tasks.
“I couldn’t even brush my teeth or take care of him,” she said.
At first, doctors diagnosed Fellows with Graves’ disease, another autoimmune disorder, which affects the thyroid. She had her thyroid removed, which resolved some of her symptoms.
Three years later, when she was five months pregnant with her daughter, a pericardial effusion landed Fellows in the hospital. The condition, a buildup of fluid around the heart, nearly killed her.
“I almost died three times in my 20s, and I almost lost my daughter — she was an emergency C-section,” Fellows said.
Doctors told Fellows she had lupus and recommended she not have any more children. While most babies of those with lupus are born healthy, lupus can increase the risk of kidney problems, high blood pressure, miscarriage and preterm delivery.
“That choice was taken away from me: whether I wanted to have any more children,” Fellows said. “[Lupus] made a lot of decisions for me. It changes your life completely. It never stops changing.”
New approaches needed
While the illness has changed Fellows’ life forever — she was forced to go on disability in 1994 because she became too ill to work — she said she’s seen little change in how lupus is treated since she was diagnosed 26 years ago. Lupus is commonly treated with corticosteroids or anti-malarial drugs to suppress the immune system.
“There’s only been one lupus-specific drug in 54 years,” she said, referring to belimumab, an intravenous medication approved by the Food and Drug Administration in 2011.
“I would love to see a cure,” Fellows said. “If it’s not a cure, at least some lupus-specific treatments. We have to get rid of the go-to old-school [treatments].”
Fellows took corticosteroids for 24 years to manage her disease, switching to belimumab a few years ago. Steroids can cause mood swings and mental health problems, increased appetite and weight gain, acne and other adverse effects.
“Not only was I dealing with my lupus, but I was dealing with the effects of steroids, which are awful,” Fellows said.
In addition to limited options for treatment, Fellows said there’s a shortage of knowledgeable doctors for Central New York lupus patients. She’s traveled to New York City to see a rheumatologist since 1994.
The myriad symptoms of lupus — sometimes called “the great imitator” — can resemble other diseases such as fibromyalgia, skin conditions, depression and multiple sclerosis, so it can take years to get a proper diagnosis.
“Lupus is far from a cookie cutter disease. It’s just a big mishmash [of symptoms],” Fellows said. “Even after diagnosis, it’s a fight.”
Moreover, Fellows said many doctors don’t take patients’ concerns seriously, adding to an already difficult diagnosis process.
“To have someone look at you and think it’s in your head or you’re making up stories — how crushing is that?” she said.
Fellows said education and awareness — for both the general public and the medical profession — are key to helping solve the mysteries of lupus.
“The biggest thing is just educate yourself … Get it out there so people actually know what it is,” she said.
Fellows encourages people to donate to the Lupus Alliance, as most of the organization’s funds go toward programs and services for local patients. Most of all, she wants patients to know they’re not alone.
“I don’t want anyone to feel like I felt,” she said. “I want people to know that we’re out there. There are people to talk to, there are people to help you, there are resources.”
To learn more about lupus and the Lupus Alliance’s work, visit lupusupstateny.org.
