The push is on to move a U.S. Senate bill forward to help those who are struggling with Lyme Disease.
It’s being called “one of the great healthcare crises in America” by the U.S. secretary of Health and Human Services, but for one Cromwell woman, it has taken over her life.
“I'm no longer as healthy or as active, going to work is no longer a weekly routine and so many other things I've taken for granted,” Tibball said.
Eyewitness News has been following Rebecca Tibball’s journey since February when she teamed up with U.S. Senator Richard Blumenthal about the Lyme and Tick Borne Disease Prevention, Education, and Research Act.
For years, Tibball didn’t get the answers from doctors she needed about why she felt extreme dizziness, puffy eyes and couldn’t tolerate light or sound.
“Sensitivity to sound was so intense and painful that I couldn't tolerate my son's Lego dropping on the floor,” she said.
She developed a rash from Lyme Disease that she said was misdiagnosed at first. In 10 months she saw 14 doctors and it was only when she visited a chiropractor that gave her some answers.
“I have lost two years of my life...I've been undiagnosed, misdiagnosed, major surgery and dealing with debilitating neurological while trying to raise a 7-year-old son,” Tibball said.
The emotional roller coaster has affected her work, her social life and her family.
Tibball was urged to share her story and speak to a panel at the Capitol in Washington D.C.
“I'm here today because I’m one of the fortunate individuals who have been diagnosed and are receiving treatment,” Tibball said. “I'm still paying hundreds of dollars for medicines because insurance won't cover it.”
Also invited was the daughter of fashion designer Tommy Hilfiger, Ally, who has struggled with Lyme Disease since the age of 7.
“Ally and I, having personal experiences and stories, I think really made a difference in the room today," Tibball said.
The bill calls for development of better tests, treatments, and exploring vaccines. Lyme Disease is often misdiagnosed when test results turn up negative, then insurance won’t cover costs.
Doctors said Lyme Disease tests are 30 years old, and most often they come back negative, even though a patient may have it.
Blumenthal has been pushing for the senate bill which is something he has worked on for the past 10 years.
Over that span of time, Lyme Disease has grown by 340 percent. A bipartisan bill was already passed in the house and now it is on to the Senate.
The bill has support not just in Connecticut, but from Wisconsin and nearby states like New York and New Hampshire.
To get involved in supporting the bill, contact your local senator to tell them why it is important to you.
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