MILLERTON - A 16-year-old Williamson High School junior, Makayla Mosher, has done more than required for her graduation project in helping spread awareness of the hard-to-diagnose tick-borne Lyme disease.
According to the organization's founder, herself a Lyme Disease patient, Linda Wales, 52, of Jackson Township in Tioga County, the teen has been so helpful with her organization "A Hope 4 Lyme Inc." that the organization wanted to honor her by publicizing her story.
A Hope 4 Lyme is a non-profit organization created to help those suffering from and distressed by the effects of Lyme and other tick-borne diseases that promotes community awareness throughout the Twin Tiers of New York and Pennsylvania, including Tioga and Lycoming counties.
A Hope 4 Lyme founder and President Linda Wales, right, and Williamson High School junior Makayla Mosher, 16, both of Millerton, wear their organization’s T-shirts.
"We depend upon volunteers to achieve our mission and would like to recognize Makayla for her many hours of service," Wales said.
To accomplish her 40-hour minimum for the project, she acted as webmaster for the website, www.ahope4lyme.org.
Mosher also attended A Hope 4 Lyme business meetings, sometimes filling in for the secretary and sharing ideas from a young persons' perspective, Wales said.
"She also burned DVDs about an awareness event for distribution, worked the concession stand at our Lyme Walk in Pine City, N.Y., assisted at a Hills Creek State Park informational program and a set up at Ives Run Tioga Youth Day," she said.
This year's awareness walk was held on May 12 at Chapel Park, Pine City, N.Y., and net proceeds were $4,935 with more than 110 people in attendance.
Though 40 hours was all Mosher needed to fulfill her requirement; "she has given us so much more," Wales said.
"The directors of A Hope 4 Lyme are very proud of this young lady. We appreciate all she has done and is doing for this organization and the community," she added.
Mosher said she really was excited about serving with A Hope 4 Lyme, because it is a small, local group.
"I felt like I could make a bigger difference in a smaller organization," she said.
According to the rules set by the Northern Tioga School District for senior projects, Mosher had to tell a board of teachers where you will be serving and what you will do, and then when it is finished,
she had to give a presentation of what you did for the required 40 hours, she explained.
Mosher said really enjoyed giving the presentation.
"It got a lot of the teachers and my student council president is interested now in getting council involved," she said. "I got my school involved and I am really excited about that."
Anyone interested in donating or volunteering for A Hope 4 Lyme, can contact Wales at Linda Wales at 537-6616.
Wales started working to raise awareness after being diagnosed with Lyme Disease in 2002.
"I was diagnosed after being sick for seven years, so I brought a doctor in to talk about Lyme Disease in a conference at Williamson High School in September of that year," she said.
She then started a support group and held monthly meetings to spread awareness.
"Through that I connected with others, even a girl who was 14 at the time who had gotten really sick with Lyme Disease," she said.
She suggested to Wales an event similar to the American Cancer Society's Relay for Life to help spread awareness, and the first Lyme Walk was held in 2008.
In that first walk there were over 300 participants at Horseheads, N.Y., and the group raised $12,000, Wales said.
Since then, though the group hasn't raised as much as that first year, but the next year A Hope 4 Lyme Inc. was formed to keep all proceeds local.
"All the money promotes awareness locally and pays for gas and expenses for those suffering with Lyme Disease," she said.
Though it is difficult to get a diagnosis of Lyme Disease, the illness is more prevalent than most people realize, she said.
"I had a list about three years ago and there were over 120 in the Tioga County area alone," she said.
One reason that the disease is hard to diagnose is often times the blood tests doctors use to find it come back negative, Wales said.
"Doctors that will treat it are not just using the blood tests but also the symptoms," she said.
Wales said when she first was bitten in the fall of 1995, she had flu-like symptoms along with what she thought was "a boil with a black head."
That turned out to be the tick, she added.
After that, she developed the "ring worm like rash" which actually was the tell tale "bulls-eye rash."
"I didn't know what it was and I didn't know anything about it, so I didn't ask about it," she said. Over the years before her diagnosis and treatment, Wales said she also experienced "a lot of chest pain," which mimicked a heart attack.
"They couldn't find anything and I was told it was job related stress," she said.
"Then I started having a lot of pain in my muscles and joints, and it was migrating from one to the next. I also had a lot of fatigue, I was told I was just getting older, and I was 36 at the time," she said.
By the time she was diagnosed on advice from her chiropractor, she had Alzheimer's symptoms setting in and excruciating pain and fatigue.
She had seen 20 different doctors in seven years, "and it was finally my chiropractor that thought it might be Lyme Disease and suggested it to me," she said.
Wales said when she was first treated in 2002 she went to Philadelphia once a month for three and a half years.
"Then I went out to western Pennsylvania every three months for three years," she added.
Complicating things is the fact that the same tick that carries Lyme disease also carries other diseases.
"It might be a co-infection that can cause problems that might be worse than Lyme," she said. The disease is treated with antibiotics, but one of the co-infections is similar to malaria, she said, so it has to be treated with anti-malaria drugs.