Lydia Vazquez raffles handmade quilt, proceeds go to myositis research
By Gretchen Sauerman
VIERA - When Lydia Vazquez developed a rash on her hands and face, doctors weren't too worried.
When she started having trouble zipping her pants or buttoning her blouse, doctors were curious, but still not too concerned.
"Then I started feeling weakness in my muscles all the time," Mrs. Vazquez said. "I started having trouble getting out of the car."
Her cardiologist told her that she needed to exercise and lose weight.
"I had no clue what it was," she said. "Then a doctor gave me some blood work, and everything was out of whack."
Doctors told her she had dermatomyositis, a rare autoimmune disorder that causes a rash and muscle weakness.
"It was a very bad prognosis," said Ms. Vazquez. "It was almost as if they had given me a death sentence."
Dermatomyositis is one of four primary myositis varieties. Patients with myositis will develop increasing muscle weakness, sometimes losing their ability to swallow or walk, according to The Myositis Association's Web site.
Because the disease is rare, affecting approximately 50,000 people in the United States, doctors frequently miss the diagnosis, Mrs. Vazquez said.
Her disease continued undiagnosed until December 2002, when she was unable to get out of bed.
"I thought I was having a stroke," said Mrs. Vazquez. "I couldn't get into the tub or shower and I couldn't walk."
Her doctor sent her to get a muscle biopsy, where a chunk of muscle about the size of a cigarette lighter is cut from the thigh.
"That's the only way to really tell if you have the disease," said Titusville resident Harold Gray.
Mr. Gray also received a muscle biopsy after noticing he could lift less and less weight when he was working out.
"I was beginning to lose strength," he said. "I couldn't walk up the stairs anymore."
Mrs. Vazquez and Mr. Gray both received the positive diagnosis after the muscle biopsies.
They both were put on a powerful steroid, Prednisone, to try to slow the disease's progression.
Mrs. Vazquez's condition continued to decline to a point where she needed to use a wheelchair and needed round the clock care from her husband, Luis.
"The stress was awful on Luis," said Mrs. Vazques. "I started having difficulty chewing and swallowing, but luckily I didn't need a feeding tube."
If left unattended, Mrs. Vazquez would sometimes fall off the couch.
Like Mrs. Vazquez, Satellite Beach resident Chris Parsons complained of muscle weakness for years, but doctors didn't respond until his symptoms became more severe.
"I lifted my shirt up and showed my doctor the scars from broken ribs (from repeated falls)," said Mr. Parsons. "He looked concerned and thought I had ALS (also known as Lou Gehrig's disease)."
The doctor sent him to a doctor who specializes in ALS for a two-hour diagnostic session.
"He said he had good news and bad news," said Mr. Parsons.
The good news was that Mr. Parsons didn't have ALS. Unfortunately, he did have inclusion-body myositis, another form of the disease.
Mrs. Vazquez, Mr. Gray and Mr. Parsons all agree that having a specialist who understands the disease is key.
"Find a doctor that has had (myositis) patients," said Mr. Gray. "No one I spoke to had ever heard of the disease."
Mrs. Vazquez and Mr. Gray both sought specialists at the Mayo Clinic in Jacksonville, and Mr. Parsons flew to Bethesda, Md., to seek help from the National Institutes of Health.
Dr. Lisa Christopher-Stine, rheumatologist and co-director of the Myositis Center at Johns Hopkins Hospital in Maryland, agrees.
"My recommendation is to find a doctor with familiarity with these illnesses," said Dr. Christopher-Stine in an e-mail. "Often, a center dedicated to these illnesses serves the patients best because doctors there are familiar with a wide variety of treatment options and an trouble-shoot better in cases of patients who fail to respond to therapy initially."
While there is no cure for myositis, patients have responded to different treatments using some of the drugs used to treat other autoimmune diseases and cancer.
A number of research projects are in varying stages, according to The Myositis Association's Web site. Information for those interesting in participating in the clinical trials is also available on the site.
Because doctors are unfamiliar with myositis, misdiagnoses are common.
"My patients have been misdiagnosed with everything from eczema to a fungal infection of the skin to rheumatoid arthritis or fibromyalgia."
One reason doctors mistake the diagnosis is because they confuse muscle pain with muscle weakness, Dr. Christopher-Stine said.
"Although some patients do complain of (muscle pain), the most common complaint, by far, is weakness," she said.
Mrs. Vazquez has embarked on a two-fold mission: to raise awareness of the disease and raise money for research to find a cure.
She and her husband, Luis, have created a handmade quilt, which is being raffled by The Myositis Association.
She is hoping to form a support group for families and patients with myositis.
To purchase raffle tickets, at $2 each, or to join the support group, call Mrs. Vazquez at (321) 255-3954.
For more information about myositis and the upcoming national convention, visit www.myositis.org or call (800) 821-7356.
Contact Gretchen Sauerman at (321) 751-5961 or e-mail her at firstname.lastname@example.org.