Woman fighting uncommon disease
There was the day the doctors told Patricia Dragani she had maybe five years to live.
In a way, they were right.
That was in 2007, when physicians struggled to identify the illness that had stricken Dragani, robbed her of her vitality, halted her on-the-go lifestyle, ended her life as she knew it.
Relaxing in the living room of the home where she lives with her husband, Chuck, in a secluded, wooded area of Armstrong Township, Dragani told about the dramatically different life she now leads.
Her days are filled with uncertainty about the progress of her disease; she is secluded from close crowds. Rarely does she venture from her home. But her days also are filled with being at peace with God, expressing her creativity in art and writing, and finding ways to use her experience to comfort and enlighten others, said Dragani, 66.
It is vasculitis, the microscopic polyangiitis strain and central nervous system version, that has done this.
It’s the same disease that claimed movie director-actor Harold Ramis last month.
Ramis, 69, died Feb. 24, from the ailment that’s so uncommon that the Associated Press didn’t mention vasculitis in his obituary, reporting only that Ramis “suffered for several years from an autoimmune disease that caused inflammation and damage to his blood vessels.”
Vasculitis is a result of the immune system attacking the patient’s veins and arteries, CNN reported in a story about Ramis’ death.
Blood vessels become inflamed, and the flow of blood is restricted or blocked, according to the National Institutes of Health. Vasculitis also can cause an aneurysm, potentially leading to dangerous internal bleeding.
“Basically, the arteries can be leaking, they can be blocked or broken, and that all causes problems,” said Dr. Peter Merkel, a rheumatologist and director of the Penn Vasculitis Center at the University of Pennsylvania medical school, told CNN. “If you interrupt the blood supply, whatever organ or tissue is being supplied downstream is unhappy.”
There are about 15 varieties of vasculitis, and three in a million people get it, Dragani said.
Not being a readily identified ailment, doctors went after the symptoms that started forcing Dragani to take time off her work as executive director of ICW Vocational Services, in Indiana.
Surgery for esophageal problems and a collapsed lung in late 2006 didn’t solve it. Red bumps appeared on her legs. Bouts of dizziness and fatigue baffled Dragani and her physicians in Indiana and Pittsburgh.
A battery of blood tests performed in 2007 at the Mayo Clinic ultimately identified vasculitis as the cause, as her condition worsened.
Next came a program of steroid treatment with prednisone, intestinal surgery, an operation on her sinuses and more.
The most successful treatment so far, she said, has been a drug called CellCept, an immune-system control medicine normally used to prevent rejection in organ transplant patients.
Not knowing whether they could ever pull in the reins on the symptoms, physicians told Dragani of a bleak outlook.
She set out to prove them wrong, by going through staggering changes in her life and outlook.
Unable to go back to work, the disease forced early retirement from ICW in 2008. She was just 60.
“You think you go to the doctor, you get a diagnosis, you get treatment and you get well,” she said. “But not with most autoimmune diseases. You have to come to terms with where you’re going to be and what you’re going to be about. The hardest part for me was rediscovering who I am and finding how I could still have purpose and value in my life.
“Everything that I knew about me was gone. So we accepted that,” Dragani said. “Over the years, all these specialists have checked everything, and I can’t get well. And the purpose of my being has become, 'how can I get well and get my life back?'
“And then I discovered, you can’t — at least not with the disease I have.”
Letting go of her active lifestyle was first. That meant dealing with the lack of strength and realizing she could get sick more easily. She could catch colds or other illnesses that would have worse symptoms and last longer.
Some of her new symptoms would almost never go away, such as the dizziness that persists because the vasculitis has damaged the part of her brain that controls her sense of balance.
You could call it the acceptance step of Dragani’s own self-support program, one that she’s creating on the fly.
“I had to learn to become my own advocate, so I have studied and continue to study everything I can learn about this,” Dragani said.
She researched vasculitis, contacted area support groups and discovered a national advocacy group, the Vasculitis Foundation, that has been a pillar for her.
Dragani learned the nuances of the disease, the known varieties of vasculitis, their effects (her strain has attacked her central nervous system), the treatments and how to cope.
“I’ve learned who my enemy is and how to deal with it,” she said.
She said she also is driven to share what she has learned so other vasculitis patients might have a little less mystery and worry to contend with.
Dragani has become a contributing writer for the Vasculitis Foundation’s national newsletter, penning reviews of books and articles about living with vasculitis. In the May/June 2013 issue, Dragani reviewed “You Don’t Look Sick! Living Well with Chronic Illness,” by Joy Selak and Steven Overman.
“Most helpful to me was the book’s description of the four major phases of a chronic illness and the best ways to cope with them,” Dragani wrote. “I have been able to develop a more realistic plan for my ‘new life’ — utilizing the gifts I still possess and am able to share with others.”
Dragani recommends an article by Meghan O’Rourke, who recounted her battle against autoimmune disease in a column, “What’s Wrong With Me?” in the Aug. 26 issue of The New Yorker, in a review she has submitted for the foundation’s next newsletter.
Dragani empathizes with O’Rourke’s experiences of having occasional energetic days followed by flare-ups of her symptoms, and being told by the doctors “that this may be ‘just how it’s going to be.’”
Support foundations are among the biggest vehicles for promoting awareness and support for research for many medical causes — heart disease, birth defects and many forms of cancer among them.
Being uncommon, vasculitis doesn’t have a wealth of community fundraising events and ad campaigns with celebrities endorsing the work to prevent and cure it.
For that reason, Dragani lamented the death of Harold Ramis, after a years-long bout with vasculitis, a fight that he kept private.
“He struggled with it for years but didn’t want the general public to know,” Dragani said. “He was still active and worked on projects, but all of a sudden, in the last few months, he became a recluse and stayed in and couldn’t do anything anymore.
“In my experience, it just takes all of your energy out of you.”
Talking with her doctors at UMPC Presbyterian in Pittsburgh, Dragani said they told her of a common thread she shared with Ramis and other vasculitis patients — a propensity for the disease to strike people with active, energetic lives.
“They said they have never found someone who was not a driven, successful person, who had vasculitis,” Dragani said.
And she noted the irony that after working so many years as an executive at ICW Vocational Services, vasculitis has left her more like the agency clients whose lives she tried to improve: with disabilities, fundamental daily challenges, no longer independent and now relying more on others for help.
“Vasculitis took everything from me — all of my energy, my self-esteem, my self-confidence, the feeling that I’m able to do things, be productive and be a successful human being. It’s gone.
“That’s why I’m trying with all of my heart to create a new life.”
Dragani won’t soon be on a lecture circuit telling her story of acceptance of the life-changing nature of vasculitis, but she said she is open to meet one on one, mainly by phone, with anyone interested in knowing her story.
Defying the prognosis has meant being faithful to doctors’ orders — “The prednisone save my life,” she said — and following recommendations for diet, exercise and just coping with the most difficult days vasculitis has handed her.
Sometimes she has been well enough for a trip to the supermarket, where she focused on staying in the least crowded aisles to avoid contact with people. But attending Mass at St. Bernard of Clairvaux Church has been out of the question for several years now, and “that’s been hard for me,” she said.
Lay leaders visit her home weekly to share communion bread and to socialize; others help with laundry, groceries and taking her to doctor appointments.
Other times, Dragani said, even catching a cold has forced her to stay isolated for weeks or months at a time.
“There have been several times when it looked like I wasn’t going to make it. Various things would happen, and conditions would get so much worse, Dragani said. “But each time — praise God — I made it through.”
And that, she has accepted, too.
“I’m suddenly now able to be alone with God. I was unhappy that I couldn’t be working, but I discovered work I can do at home. I can talk to people, I’m on a prayer chain at church, and I can talk to people who have problems and help them find resources that they might not be able to find on their own.
“I’ve learned about peace, discovering the beauty of quiet,” she said. “It’s like a spiritual life now, versus physical. I want to share my gifts more than before.
“It’s easier to love and be peaceful when you’re not in the middle of a job with all kinds of deadlines.”
Her daily job now is simple. Find a way to get through the day.
“I’d love to help, to be a spokesperson for what’s going on with this illness — to reach a lot of people who may not realize what they have,” Dragani said. “I want to help people to get through their daily struggles. I think I’ve figured out so much about how to do that and come out the other end and find joy and peace and love. I’d be thrilled to share that with people I don’t even know.”
What she offers are encouragement, advice, even referrals to the Vasculitis Foundation and other agencies.
“It’s almost as though my mission in life has been to help people with disabilities. This is a form of disability. … So it is like an extension of my work for those 37 years.”