REPORT ON MARCH 26, 2008 LISTENING FORUM
We want to once again extend our gratitude to Ed Romaine, who hosted this Lyme Listening Forum.
We all learned a lot. Patients and patients' loved ones, daughters, fathers, mothers, testified about the horrible devastating difficulties that face Lyme patients.
One woman said that she mourns her former self.
People talked about losing their health, their jobs, their vision, their homes, their families, their children and even their dogs.
Marriages fail, friends don't understand, co-workers walk away.
Doctors deny, denigrate, and even lie.
Patients get worse with misdiagnosis, inadequate treatment.
Many of the same old stories, but still, we learned more and we never cease to be surprised by how terrible and awful it is for patients, how many years and years they suffer before they get any relief at all and how they almost died, and now have heart problems and many serious issues with compromised health.
And to think, it could all - or most all have been prevented.
Thanks again, Mr. Edward Romaine, you listen and are a true hero.
The good news is that Ed had a lot of great suggestions - and so, we will be contacting you as we go forward with some plans for relief.
There was a very good attendance with many patients testifying.
Thank you to all who testified and who attended and gave their support.
Empire State Lyme Disease Association