After one year of visiting multiple doctors, taking a variety of antibiotics and having many surgeries, none of which helped, Lecia Brown, 30, was diagnosed with Wegeners Granulomatosis.
The disease, which she was diagnosed with in January, is a rare disorder in which blood vessels become inflamed, making it hard for blood to flow. It mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys, although other areas may be involved. The cause for the autoimmune disorder is unknown.
"The disease has changed my every day activities," Brown said. "I'm tired and have no energy, which changes being a mother and wife. It's made it a lot harder, because I don't have the energy that I did, nor will I ever now."
The disease's symptoms include: Joint pain, blood in urine, cough, fever, inflammation in the ears, hearing loss, inflammation in the eyes, lack of energy, loss of appetite, nasal membrane ulcers, night sweats, numbness of limbs, weight loss, weakness and fatigue.
The disease cannot be cured, but there is a treatment for it -- a high dosage of steroids and chemo treatments. Brown, who is an instructional assistant in the library at Jackson Township Elementary School, has been receiving the treatments from Cleveland Clinic, Cleveland, Ohio, which is one of the two hospitals in the country that deals with the disease.
"I've had two chemo treatments, and they thought I was in remission, but a couple weeks ago, they found out I'm not," Brown said. "They are debating on using a different chemo, but it has a lot of side effects like hair loss."
Brown also takes weekly chemo pills, which give her migraines, flu symptoms and make her tired.
"It's a lot to deal with weekly, and I will have to take them for the rest of my life," Brown said, who also takes many steroids. "A lot of the treatment symptoms can be embarrassing. The treatments are working, but it just takes time."
Brown had to take off work from between January and Spring Break. During her chemo infusions, she must be admitted to the hospital and monitored.
"I have to be away from home to go to Cleveland for my treatments," Brown, who has two young children, said. "It's something my kids have to get used to. It's been hard for all of us."
Wegeners Granulomatosis is categorized as a Vasculitic disease along with 14 other diseases including: Behcet's disease, Buerger's disease, Central Nervous System, Churg Strauss Syndrome, Cryoglobulinemia, Giant Cell Arteritis, Henoch-Schonlein Purpura, Hypersensitivity Vasculitis, Kawasaki disease, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid Vasculitis and Takayasu's arteritis.
May is Vasculitis Awareness Month, an international effort organized by the Vasculitis Foundation to advance public awareness of the rare diseases, as well as the progress in treatments and advances in research.
The Vasculitis Foundation is an international non-profit organization with more than 4,000 members in 58 countries. The group provides educational materials for patients with Vasculitis, their caregivers, family members and medical professionals, as well as encouraging and supporting research into the cause, cure and treatment of the diseases.
One in 30,000 people are affected with the same disease as Brown, and 90 percent of patients have cold and sinus symptoms.
Five of Brown's friends began a group called Wegeners Awareness Warriors with the purpose of supporting Brown.
"We call ourselves the warriors because we want to fight to get the word out," Brown's friend Jessica Hayden said. "We're just a group of friends who care about the same friend."
Hayden said through the group getting the word out about the disease, Brown has been in contact with a few people in the area who also have the disease.
"We're hoping to get them together so they can support each other," Hayden said.
The group of close-knit friends decided to bring awareness to the disease and educate people about the issue.
"I told (Brown) whether I had to bake 1,000 cookies or walk 1,000 miles, I would help her bring awareness to this disease," Hayden said.
Wegeners Awareness Warriors have been planning their first event for the past five months.
In recognition of Vasculitis Awareness Month and in honor of Brown, the Wegeners Awareness Warriors are having a Wegeners Awareness 5K Walk/Run and silent auction Saturday, May 19.
The silent auction will be from 8 a.m.-11:30 a.m., with items such as Thirty-One products, Mayberry Maltshop gift certificates, gas cards, Kroger gift cards, Mary Kay products, Lia Sophia products, Vera Bradley products and Walmart gift cards, among other things.
The 5K will begin at 9 a.m., at Forest Park, Brazil.
Registration costs $25, with a T-shirt included. To register, pick up a form at any of the following locations: Jackson Township Elementary, Riddell National Bank (Brazil locations), Angel Falls in Clay City or Ceres Solutions in Brazil and Clay City.
All proceeds from the event will benefit Brown and her family. Donations can be made in Brown's name at any Riddell National Bank.
As of Thursday, May 10, Hayden said almost 300 people were registered for the 5K.
"We never dreamed we'd have this good of a turnout," she said. "We'd like to make this an annual event."