Crystal Blickfeldt wants to make orange the new pink.
"Orange is the color for multiple sclerosis, and while not taking away from breast cancer because it is a great cause, I would like to see MS out there just as much. The MS Society doesn't spend dollars promoting awareness about the disease; they spend money on research and that is great, but I want to help in the role of getting information to people," said Blickfeldt, chairwoman of the Walk MS Tucson on March 9 at Reid Park.
Blickfeldt, 40, is more than a figurehead; she was diagnosed with MS six years ago after experiencing optic neuritis, which can cause blurring or graying of vision or temporary blindness. It is a classic symptom of MS, a chronic autoimmune disease in which the body attacks the myelin sheaths surrounding nerves, impairing normal function of the central nervous system.
Other symptoms of the disease, which generally takes four courses of varying severity, include fatigue, numbness of the limbs, walking, balance and coordination problems, and paralysis or loss of vision.
In Blickfeldt's case, the vision problems occurred shortly after a dental visit that affected a facial nerve, so she attributed the change in vision to the damaged nerve. When the problem continued, she visited her ophthalmologist and was referred immediately to a neurologist who confirmed the diagnosis of MS.
"I am one of the few people I know who have had the diagnosis who had no clue I was even sick. I had a myriad of symptoms that were classic, but I could explain away everything, like fatigue, dropping things, running into things and falling … even back pain, which I thought was from falling when I was teaching my boys to roller skate," Blickfeldt said.
Denial is common
Once she was diagnosed, Blickfeldt, who at the time was a single mom with two children and a full-time job, had a typical reaction: denial.
"I looked at the neurologist, and the first thing I said was, 'I don't really have time for this. This isn't OK,' " she said.
Blickfeldt's reaction is common, as are feelings of anger, sadness, stress, depression and isolation. More than 7,000 Arizonans live with the disease, according to National MS Society Arizona Chapter Tucson Community Development Manager Rachel Zuckerman.
"Our numbers are skewed to the low side since doctors are not required to report MS, and many people choose not to disclose that they have it," Zuckerman said.
The MS Society Arizona Chapter offers a variety of programs for the newly diagnosed as well as those coping with the disease long-term. Lifestyle programs such as "Knowledge is Power," "Living Well" and "Free From Falls" are designed to help those with the disease improve well-being and reinvent their approach to life with multiple sclerosis. Local exercise programs include yoga and "Cool in the Pool," while the MS Social Club offers social interaction. Local plans include a 20s/30s Squad (for men and women in their 20s and 30s) and other programs.
The Arizona chapter also offers an MS Resource Center (1-800-344-4867), a literature/lending library, workshops, a teleconference series and 15 support groups statewide.
Living with MS
Blickfeldt, who runs a support group in central Tucson for patients and their families, said the endeavor has saved thousands of dollars in therapy.
"There were four or five of us at the first meeting, and it was the best two hours of my life because I was with people who finally understood what I was feeling. I didn't need sympathy; I just needed someone to understand what I was feeling and the problems I was experiencing," she said.
Six years after being diagnosed, Blickfeldt is in a positive place physically and emotionally. She is currently not taking medication due to harsh side effects, but has learned to listen to her body and avoid triggers such as heat, stress and lack of sleep to ward off flare-ups.
She has also found fulfillment through events such as Walk MS Tucson. Last year the event raised more than $75,000, and all proceeds benefit the National MS Society Arizona Chapter, including local programs and services.
This year Blickfeldt hopes to raise $100,000. Her team, Crystal's Crusaders, has raised more than $7,500 toward that goal.
"One lady told me to ask everyone on the street; the worst they can do is tell me, 'No!' My catchphrase is, 'What if your dollar is the one dollar that finds a cure? It could be. You never know,'" she said.
Blickfeldt is optimistic about the future.
"MS opened up my life, really. I am not afraid or ashamed anymore, and I have done a lot more with life than I would have had I never been diagnosed. I get to help a lot of people and that makes me happy," she said.
If you go
• What: Walk MS Tucson, a two-mile, family-friendly walk.
• When: 9:30 a.m. March 9; registration begins at 8.
• Where: Reid Park, at ramada 20 in the northwest corner of the park near the intersection of South Country Club Road and East Camino Campestre
• Cost: Free; donations are accepted
• Register or volunteer: Participants can register as individuals, create a team, or join an existing team at walkaza.nationalmssociety.org/site/TR/Walk/AZAWalkEvents?fr_id=20656&pg=entry online or call 325-0755.
• The details: Festivities include booths with information and education about multiple sclerosis, a booth that simulates the experience of those living with MS, local resources such as Handi-Dogs, music and entertainment, snacks and post-race Eegee's. Participants who raise $75 get a free pass to the Reid Park Zoo for the day; those who raise $100 get a free T-shirt.
Contact freelance writer Loni Nannini at firstname.lastname@example.org