Ann-OH
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Let's hear it for everyone in the Stull family!
Crystal appeared on a story about Lyme disease and the poor treatment thereof on WEWS Channel 5 in Cleveland last week. She has been inundated with requests for interviews and has been giving talks to all sorts of organizations and local government groups. She is one determined and articulate woman!
This story appeared in the Wooster, Ohio Daily Record which has a wide circulation in several counties in that area.
'This is what we are fighting for' Dick Stull, family, raise awareness of tick-borne illness and its effects 18 hours ago
Photo By Bobby Warren Dick Stull and Crystal Stull, his daughter, are on a mission to raise the awareness about Lyme disease. They have been visiting with commissioners in Wayne and surrounding counties. So far, Gov. Ted Strickland and the commissioners in Wayne and Ashland counties have proclaimed May as Lyme Disease Awareness Month. By BOBBY WARREN
Staff Writer
WOOSTER -- Dick Stull is ticked.
While the barber normally cuts through heads of hair, he and his family have found themselves trying to cut through a lot of red tape in order to raise awareness about Lyme disease, a tick-borne illness first recognized in Lyme, Conn., in 1975.
Dick Stull does not have the disease, but he has seen the effects it has had on three generations of his family. Daughter Crystal Stull, granddaughter Courtney Pacula (Crystal Stull's daughter) and great-granddaughter Raven Pacula all suffer from the disease.
The symptoms and pain were so severe neither Crystal Stull nor Courtney Pacula work any longer. In Crystal Stull's case, she is on full disability.
"She never knows if it will be a good day or a bad day," Dick Stull said of his daughter.
"Whenever people ask me how I'm doing, I say, 'Every day is an adventure,'" Crystal Stull said.
Courtney Pacula, who lives in Winesburg, knows about every day being an adventure.
"I never know where I am going to hurt each day," she said, but the chances are good she will suffer some type of pain. "It's very rare that I have 100 percent (good) days where I feel great, but when they come I am ecstatic."
Raven was the first to be diagnosed. She was 1 1/2 years old in 2002 when the family went camping in Knox County. She was bitten by a tick, and a rash appeared in the form of a bull's-eye. But for the other two, they said they do not know exactly when they contracted the disease.
Crystal Stull, who lives in Ashland, suffered with a variety of symptoms and said she was misdiagnosed for more than two years. She believes she got the disease sometime in 2002. Courtney Pacula most likely was infected in 2005.
The family said they have had trouble finding someone locally to treat Lyme disease. Every three months, Raven is taken to Connecticut to see a physician who focuses on children with the disease. Crystal Stull travels to Pennsylvania every month.
Courtney Pacula was making the trip to Pennsylvania, but the trips just became too much for her. It's been about a year since she has received treatment, and symptoms like chronic fatigue, insomnia and migraines are returning with more intensity. She described dealing with her condition as a never-ending battle.
Despite the pain and suffering, Courtney Pacula said she tries hard to remain active and go on long walks so she is not reduced to just sitting on the couch.
Crystal Stull and her daughter attribute the chronic symptoms they endure to the disease. From their experience, the medical community has been reluctant to adopt their perspective on the issue. In a 2006 study by the Infectious Diseases Society of America, researchers state the existence of chronic Lyme disease following the recommended treatment of antibiotics is questionable in the absence of objective clinical signs of disease.
As Crystal Stull told Wayne County Commissioners Ann Obrecht and Scott Wiggam, "This is our calling. This is what we are fighting for."
Even though they have been met with some resistance, the Stulls continue trying to raise awareness about the disease. So far, with the help of state Rep. Jim Carmichael, R-Wooster, Gov. Ted Strickland proclaimed May as Lyme Disease Awareness Month. So have the Wayne County and Ashland County commissioners. Meetings have been scheduled with the commissioners in Holmes and Richland counties, too.
Dick Stull said he hopes for a medical breakthrough regarding Lyme disease, but he and his family realize it will take time.
Every day, Courtney Pacula said she hopes a cure is discovered.
"Nothing is guaranteed in this world," she said. "I hope they come up with something for my daughter."
Business and Wayne County government reporter Bobby Warren can be reached at (330) 287-1638 or e-mail [email protected].
CaliforniaLyme
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What a neat familY*!*)!!!!!!!!!!!!!!!!!
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All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Ann-OH
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Crystal, once again, gets another county to declare May Lyme disease awareness month!
You can do this too. Just call your county offices and ask to make a presentation at the commissioners next meeting. If you can't go, send a letter explaining the need and ask them to issue a proclamation, as Crystal did.
It will almost always get newspaper coverage as there are reporters assigned to each of those meetings and always looking for something new.
Here is where you can find the names of YOUR county Officials, no matter where you live in the U.S.
Just go to your state and scroll down to find your county, hit that and you will be able to find your commissioners. You can contact one or all of them by e-mail there.
By Mark Jordan , News Staff Reporter Wednesday, May 16, 2007
MOUNT VERNON - Crystal Stull of Jeromesville in Ashland County suffered from headaches, muscle aches, confusion, vertigo and fatigue for two years before getting a diagnosis: Lyme disease.
She said the disease remains controversial and poorly defined, with some authorities questioning whether long-term symptoms are necessarily related to the disease, while others say that it can in fact be a chronic, returning condition.
Not many doctors claim to have an expertise in the subject, so Stull went to many doctors before getting the diagnosis.
To compound the situation, Stull's daughter and granddaughter also contracted the disease. Due to the scarcity of treatment options in Ohio, the family has been forced to pursue treatment in Pennsylvania and Connecticut.
Stull met with the Knox County Commissioners on Monday as part of her statewide campaign to promote public education about the disease.
To help raise awareness of the issue, commissioners Bob Wise, Tom McLarnan and Allen Stockberger issued a proclamation designating May 2007 as Lyme Disease Awareness Month in Knox County.
The proclamation reads as follows: "Whereas Lyme disease can be spread by an infected tick to humans, pets and farm animals; whereas Lyme disease is the most commonly reported tick-transmitted disease in the United States;
and, whereas Lyme disease is most easily treated with antibiotics when detected early, and is more difficult to treat after spreading through the body;
therefore be it resolved that the Knox County Commissioners do hereby proclaim May 2007 as Lyme Disease Awareness Month."
Symptoms of Lyme disease include but are not limited to: Rash at the site of a tick bite, a bull's-eye rash, unexplained hair loss, headache, twitching, facial paralysis, blurry vision, pain in the eyes, buzzing in the ears, joint pain and swelling, night sweats, tremors, unexplained fevers and fatigue.
Stull noted that the chance of exposure is not limited to hunters and outdoorsmen.
"You don't have to necessarily be in a wooded area," she said. "We're not outdoorsy people. We live in town."
Stull added that the most time her family spent outside was in golfing, but that somehow they still got bitten. Her granddaughter had a bullseye-shaped rash around her bite, which is a clear symptom which only appears in about 10 percent of cases.
"We've really fought hard for this," said Stull, "because there are literally millions of people out there that are walking around that do not know they have this because it's being misdiagnosed."
She said she is convinced Lyme disease is often misdiagnosed as multiple sclerosis, attention deficit disorder, fibromyalgia and Alzheimer's disease.
Stull also cautioned that not many people know that it can be spread by more than just ticks. She said that the disease can also be spread by deer flies, horse flies and fleas.
Ann-OH
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Thanks to Karen, Tuscarawas County has also declared May, Lyme disease Awareness Month. That makes 5 counties so far, and Crystal is going to appear before the commissioners of county number 6 on Monday!
It can be done. You can do it too. Those county commissioners want to follow through and educate the citizens and the medical community. It can be really great.
Just call your county offices and ask to make a presentation at the commissioners next meeting. If you can't go, send a letter explaining the need and ask them to issue a proclamation
It will almost always get newspaper coverage as there are reporters assigned to each of those meetings and always looking for something new.
Here is where you can find the names of YOUR county Officials, no matter where you live in the U.S.
Just go to your state and scroll down to find your county, hit that and you will be able to find your commissioners. You can contact one or all of them by e-mail there.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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