Being diagnosed with a rare illness can leave a person feeling isolated — but Mansfield woman Sandy Nye has found a way to ward off feelings of loneliness with the help of social media.
Nye, 62, was diagnosed with a form of vasculitis in 2014, just one year after retiring as a special education teacher at Ontario Stingel Elementary. She previously worked at Mansfield City Schools. Her teaching career spanned 35 years.
For about five years leading up to her diagnosis she had autoimmune problems for which she took medication once a week and visited a rheumatologist every three months for lab work.
"I was fine,” she said. “I taught. I tutored in the evenings. I traveled. I did everything. But every three months I had to have lab work, and after five years of being fine, things turned negative.”
Her doctor asked that she return for additional testing when her lab work showed that something was off. Nye underwent a kidney biopsy and thereafter was diagnosed with microscopic polyangiitis (MPA), which is estimated to have a prevalence of 1 to 3 cases per 100,000 people in the United States, according to the Vasculitis Foundation.
At the time, Nye wasn’t what she’d consider Facebook savvy, but she decided to peruse the social networking site for possible answers and information on her rare illness. It was then that she stumbled upon a Facebook group for people with vasculitis.
“Once I got into a closed group, it was a tremendous relief because all of a sudden I had this social, emotional group of individuals who were going through the same things that I was dealing with,” she said.
Nye currently serves as co-administrator for three vasculitis-related groups on Facebook.
“Essentially we help dozens of people every single day around the world,” she said. "It might be a newly diagnosed adult, it might be a newly diagnosed child whose parent is searching desperately for help, it might be a caregiver, it might be a friend of someone with an illness reaching out.”
These groups allow members to offer one another emotional and informational support.
“Through these Facebook groups, we are able to share our fears — there are no cures for our illnesses, only medications that help many of us reach temporary remission — our hopes, and our suggestions based on personal experiences,” she said.
Nye said she’s been able to connect with people across the globe, offering her personal insight as well as helping guide them toward resources in their vicinity.
In addition to researching as much as she can about vasculitis, Nye has attended the last two International Vasculitis Symposiums and plans on attending her third one in July. She’s also gone to the Vasculitis Foundation Canada Symposiums for the past five years.
She praised the Vasculitis Foundation website, calling it the No. 1 place to find information if you or a loved one is diagnosed with vasculitis.
“They have been a godsend to me,” she said.
In addition to the Facebook groups, Nye has found tremendous support from her husband, Bob, whom she described as her biggest supporter.
“He attends every doctor appointment, symposium, etc. He makes living with my illness much easier,” she said.
Nye’s usual symptoms for vasculitis include fatigue, insomnia, pain, rashes, vision problems, nerve problems and flu like symptoms — though every day is different, she said. She’s on many medications, some are taken weekly and others daily. Some medications are taken by infusion.
“I deal not only with the illness, but the side effects of the illness or the side effects of the drugs, which sometimes can be as harsh as side effects of the illness,” she said.
There is no known cause or cure for MPA at this time, but with early diagnosis and proper treatment, many patients can lead full, productive lives, according to the Vasculitis Foundation.
Common concerns shared by others with vasculitis include coping with fatigue, insomnia and pain, Nye said.
One of her first Facebook friends who shares her same rare illness is a woman from Paris, France.
“She and I communicate not only through our groups now, but through email and chats,” Nye said. "She's just a fascinating woman who has gone through very, very similar problems that I've gone through, and she went through them before me so she has just been a tremendous mentor to me.”
Through the international Facebook groups, Nye has even connected with people locally, including a man living in the Mifflin/Ashland area who has MPA and a woman in Shelby who has their “sister illness.”
“It's just phenomenal that I've found these people that are right here in my community,” she said.
She has had the chance to meet both of them in person. She ran into the Shelby woman at Meijer, having recognized her face from Facebook, and one of the “world’s longest hugs” ensued.
From foreign countries, to nearby neighborhoods, Nye has found that support she was searching for.
“If you have a rare illness and you feel lost and alone, please go to social media and find others that can give you emotional and informational support,” she said.