KAYSVILLE — Ryan Ren knows too well the devastating effects that multiple sclerosis can have on a family.
His father, diagnosed in his 30s, struggled with a slow physical decline and died from complications of the disease more than a decade ago. It was just years from Ren's own "shocking" diagnosis at age 30.
"I remember telling my dad that it would be easier on me to be in his place than to see him go through what he is going through," Ren said. Getting the unexpected diagnosis, he said, was like his "worst nightmare coming true."
But the Kaysville father of four young children has faith in modern medicine and hope for a cure and he's sharing that with everyone he meets, as well as speaking at a free conference for MS patients and their caregivers on Saturday.
The gathering, sponsored by Massachusetts-based drug researcher Genzyme, aims to bring people in the MS community together for education and support purposes, as well as inform them what services are available to them locally.
Ren said he'd like the public to know that what patients need most is hope, and knowing that "no matter what happens, they will be taken care of."
The chronic and unpredictable disease of the central nervous system affects more than 400,000 Americans, with nearly 200 new cases diagnosed every week, according the the U.S. Centers for Disease Control and Prevention. The organization notes, however, that the disease is not required to be reported, so actual prevalence is unknown.
National Multiple Sclerosis Society statistics show that women are two to three times more likely to have the disease than men, but the same is true with other autoimmune diseases. Symptoms include overwhelming fatigue, visual disturbances and difficulties with mobility, among others, although the disease presents itself differently in people.
Though new insights about the disease constantly are being uncovered by drug and disease researchers, the impact and effects MS has on individuals is still not understood by the general public. Funding for research is limited mostly to grass-roots efforts, like those of the national and local chapters of the MS Society.
But, Ren says, things have changed greatly since the days his father was being treated. New drugs provide for a slower progression of the disease, often lengthening lives of patients.
Even with his diagnosis, Ren's been able to regain a lot of functioning and is grateful for what he can still do — knowing it could all change at any moment.
"Even though the outlook was very bleak, I decided I wasn't going to let (MS) define me or who I was," Ren said. "I will do everything in my power to fight this disease, but in the end, I realize it is out of my control."
Ren, now 38, was certain he had MS when his body froze one night before bed. He sensed his brain telling his body to move, but it did not respond. A subsequent MRI revealed 20 lesions, or spots on his brain, where immune system-induced inflammation had attacked the protective insulation of nerve fibers, resulting in impairment. He said his body performed similarly to someone who had suffered a mild stroke.
Weakness continues on his right side, but Ren is active and still enjoys golf and skiing on occasion, and he relishes any moment he spends with family and friends.
"It's not an easy disease to live with," Ren said, adding that the associations in his life and his relationships with other people keep him going.
"Having MS has allowed me to feel pain, suffering and despair," he said. "But, out of this, it has helped me develop an appreciation, a sensitivity and an understanding of life that has softened my heart and filled me with compassion, and a loving concern for others."
His father spent his last three years in a bed, unable to move or see. Ren said it's a scary prospect, but dwelling on it will "destroy you."
"You never know, I could be blind tomorrow. It's more a mental battle than a physical one now," Ren said, pointing to the uncertainty and unpredictability of the disease. "We don't have any control over what trials are handed to us, but we have absolute control of how we handle it."
The conference is Saturday, March 15, at the Sheraton Salt Lake City Hotel, 150 W. 500 South, from 11 a.m. to 2 p.m. In addition to information about the disease and a chance to meet others Utahns who suffer with MS, breakfast, lunch and free parking are provided. To register for the event, visit www.onedayforeveryday.com.
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