(NEW YORK) — Ann Romney told Robin Roberts Thursday on Good Morning America that the multiple sclerosis diagnosis she received 14 years ago was her “darkest hour” that left her “humbled” and “crushed” to dust.
Romney was diagnosed with multiple sclerosis in 1998 at age 49, after experiencing severe numbness and fatigue. While the average age at which a patient is diagnosed is 37, so many other patients, are at the beginning or middle of careers, marriages and raising children.
Multiple sclerosis is an autoimmune disease that affects the brain and spinal cord. The disease attacks the myelin sheath, a protective covering that surrounds nerve cells, and approximately 400,000 Americans have MS, according to the National MS Society. About 200 people are newly diagnosed each week.
While the disease is degenerative, symptoms, which affect the muscles, bowel function, vision, nerve and sexual function and personality, can vary and range greatly in severity.
Helen Solinski of San Jose, Calif., said she felt like the “rug was pulled out from under” her when doctors gave the diagnosis. She had just given birth to her son, and she said she ran from neurologist to neurologist seeking a cure.
“How would I take care of my child?” she wondered. “Was I going to be a little league mom in a wheelchair? Would I ever feel my son’s hand in mine? I was completely numb on my left side during the first attack.”
For Michelle Clos, 45, of Texas, her MS diagnosis sounded like “a lot of alphabet soup,” she said, and she struggled to find a strategy that allowed her to address the challenges of MS without letting MS define her.
After she was officially diagnosed with the disease in 2001, she said she had to change the way she thought about life, “get rid of the non-essentials and use a positive approach to handle everything that life was throwing my way, which worked well for me, led me to reduce how much I worked and take what I learned about myself to start coaching others who were impacted by MS,” said Clos.
People have spent their entire life up until the point of diagnosis imagining their life in a certain way, so they have to interpret how they’re going to let go of that picture and how they see themselves, and fit that new information into the sense of who they are, Rosalind Kalb, a clinical psychologist and director of the Professional Resource Center at the National Multiple Sclerosis Society, told ABC News in June.
“It’s a grieving process,” she said. “And you can’t move ahead on how you’re going to live with MS until you spend a little time with the loss of a life without MS.”
While the diagnosis can throw one’s life into disarray, patients should not jump to any conclusions about how the disease will run its course, said Kalb.
It’s important for patients not to rush out and quit their jobs or break up relationships because they may be able to live a full life with manageable symptoms,” Kalb said.
Doctors and patients do not know how their multiple sclerosis will behave in the early weeks and months after diagnosis, and it is really only in hindsight that one can understand the severity of their disease.
Some days are harder than others, Solinski said, but “the sun will come up every morning,” she said. “It does and so do I. We all adapt …What truly drives me is my mission to stop this disease.”
Solinski found purpose in combating her disease when she began working at the Myelin Repair Foundation, a nonprofit dedicated to funding research for myelin repair treatment targets.
“The Myelin Repair Foundation was exactly what I needed to get involved to channel my fear and anxiety of the what the future might hold,” said Solinski. “MS can run in families, my greatest fear is my son receiving a diagnosis of MS. I can’t stop fighting the disease.”
For Clos, she said she takes the disease day by day by focusing on her goals.
She encourages “individuals in the MS community to pursue their own goals and overcome their challenges.” She adds, “I continue to practice gratitude daily.”
Copyright 2012 ABC News Radio
Karen Lehr, KIVI
Magdala Louissaint, KPVI
Susan Scutti, CNN