What would you do if your life as you knew it suddenly changed? If all the things you liked to do were suddenly off limits? How about having a disease that is so rare that doctors are still trying to learn about it?
This is exactly what Falconer resident Scott Stearns is facing. At age 40, what should be the prime of life, with his lovely wife Tracy, three children and two grandchildren, Stearns suddenly got thrown a curve last fall.
The day before Thanksgiving, Stearns - who grew up in the town of Poland and went to school in Frewsburg - felt a tingling, weird sensation on his left side, but thought it was just from overworking his muscles. While attending the family holiday dinner, others told him they thought he might have had a stroke. The Friday after Thanksgiving he went to WCA, and they tested him, but it wasn't a stroke. From there he went to Hamot in Erie, Pa., where they ran tests and diagnosed Transverse Myelitis. They found lesions on his spinal cord, and immediately gave him large doses of steroids to fight them. They ran other tests during his 11 days there. After coming home, he felt a bit better and tried returning to work.
Scott Stearns, seated, is surrounded by some of his support group. Pictured in front, from left, are: Tracy Stearns, wife; and Kasey Daniels, granddaughter. Pictured in the second row are: Dillon Smith, grandson; Stearns; and Brayden Coleson, nephew. Pictured in the third row are: Stephanie Daniels, daughter; Tristan Johnson, nephew; Jamie Haskins, sister-in-law; Kaitlyn Coleson, niece; and Shelly Coleson, sister-in-law. Pictured in the fourth row are: Debbie Stearns, mother; Rick Stearns, father; Corey Stearns, brother; JoLynn Stearns, sister; and Tenneil Stelmack, friend.
Just before Christmas, Stearns felt more strange sensations on his left side. He was going to see a doctor in Buffalo, so when he was told in the emergency room he should go to either Hamot or ECMC, he decided to go to ECMC. His family had copies of tests done in Hamot to use for the doctor's appointment, so they took these along. At ECMC, tests showed that the lesions on Stearns' spinal column had grown dramatically and were spreading. He underwent seven more days of steroid treatments, and then underwent five difficult rounds of plasma pheresis. His blood was removed from his body, cleaned and returned through a port in his neck. This was to treat disease that attacks the nervous system.
At Buffalo General, there is the Jacobs Neurological Institute. Dr. David Hojnacki, head of the institute, was called in on Stearns' case. Results have now shown that the cause of the problem is Neuromyelitis Optica, or NMO. Hojnacki, who is a specialist in this disease, said Stearns was very fortunate to have gotten the diagnosis of Transverse Myelitis in Erie, because it is not often recognized so early. It is one of the symptoms of NMO. Test results showing antibodies in the blood, which were attacking Stearns' autoimmune system, were the other hallmark of NMO. Once considered a form of Multiple Sclerosis, it is now recognized as a separate condition. There are only 4,000 known cases in the United States. As such a rarity, this disease is not widely known in the medical community. Specialists and support groups are trying to make others aware so diagnosis and treatment can be done sooner. Currently, there is no cure, but new medicines and procedures are being used to help patients go into remission.
Right now, Stearns is home, and undergoing therapy three times a week. He has lost his fine motor skills, and still suffers from weakness and pains. Trips to doctors, medicines that he must take, as well as other procedures, are not completely covered by insurance.
For someone who had been active all his life, this is devastating. He cannot go anywhere on his own, lest something happen. Doctors have told Stearns that flare-ups can come on suddenly, without warning and he should not be more than one hour from emergency care. An avid outdoorsman, NASCAR fan, hunter and camper, NMO has totally changed life as he knew it. He must take care that he isn't exposed to any airborne pathogens, since his immune system suffers because of the disease and its treatment. No longer can he help his parents, Rick and Debbie Stearns, on their dairy farm.
MARCH 15 BENEFIT
Support for Scott Stearns has been amazing. Not only his immediate family and extended family, but also friends and co-workers have rallied around Stearns. Unable to work at Rand Machine Products because of his illness, the bills have been mounting. The outpouring of love for Stearns and his family has been extraordinary.
As part of that support, a benefit has been planned for Saturday, March 15, from 1-9 p.m. in the Frewsburg Fire Department Blue Building on Hazzard Street. Admittance is free. So many things will be going on at the event. There will be a bake sale, Chinese auction, 50/50 drawing, entertainment, food and beverages, and family activities. Brothers By Choice will serve a spaghetti dinner. The cost is $10 for adults and $5 for children 12 and under. Entertainers scheduled are Dill Weeds, country; Sweet Ass Cream Corn, 70s to today; Headbangers Ball, 80s hairband tribute; Amongst the Thorns, original metal; and DJ Matt Ekstrom.
As part of the benefit, a CD jukebox, loaded with 100 CDs, was donated by John Piazza, Scott's uncle, and will be given away. Tickets are $5 each. Those interested can go to www.facebook.com/scottstearnsbenefit for more information. Tickets will be available at the benefit. Advance tickets for the dinner and/or the raffle can be obtained by contacting Shelly Coleson at 969-7432 or email@example.com; JoLynn Stearns at 969-2737 or firstname.lastname@example.org; or Debbie Stearns at 665-6766. Anyone who would like to contribute to the benefit may use the same contact numbers.
While the benefit is to help Stearns and his family, they are also trying to get the word out to others about the disease, hoping that more doctors will learn about it and research will be ongoing to discover new treatments, and, eventually, a cure. Stearns gave his permission for information on his case to be studied for that reason. His grit and determination as he fights this life-altering disease is an inspiration to all who know him. He has numbness as well as pain, so he has had to learn to compensate. If he closes his eyes, he can't touch his nose with his left hand, because he can't feel where the arm is.
"It feels like there's balls across my feet," Stearns said. He compared holding a couple of ping pong or golf balls in your hand. "That's what my foot feels like all the time."
So he had to learn to compensate, because he can't feel the bottom of his feet, he just feels the pressure. His brother Corey added, "Here's a guy that, we work a 10-hour shift in the shop, then he'll go out and cut wood until dark, you know, cut and split wood, and now, 20 minutes walking down the hallway, he's got to stop and rest for an hour."
Stearns says he guesses it's getting better, they tell him he's getting stronger, but it isn't fast enough for him.
Stearns and his family have joined online support groups, which help them feel that they aren't alone in this. They get "really good feedback" to understand what is happening. As he faces the future, the support he receives is an invaluable aid to his well-being, and that of his family.