Cleve Jones, the AIDS activist who founded The Names Project, the organization responsible for the AIDS Quilt, will be speaking tonight at Hudson Valley Community College, according to timesunion.com (thanks @zebrafinch for the article). He says of the history of AIDS activism: "I think it's very important for people to understand the history of this pandemic, and how it happened. We live in the one country on the planet that had the advance warning, the knowledge, the institutions and the resources to stop this in its tracks. And we failed."
This happened to AIDS victims. And it is happening to us. As we remember World AIDS Day we can see a path that has already been blazed by the activists, the victims, and their families. And we must make the same thing happen for Lyme.
To read the whole story about Cleve Jones go here:
http://tinyurl.com/clevejonesspeaks
Tuesday, December 1, 2009
Monday, November 30, 2009
LYME COUNTS
This website was created to log the progress of one very special quilt, a quilt that bears the names of those who are suffering and have died from what is quickly becoming the fastest-spreading disease in America, perhaps other countries as well. Victims of this debilitating and ultimately deadly illness are mistreated by doctors, insurance companies, and their family and friends mainly because of misconceptions about whether infection still persists after short-term antibiotic therapy.
The problem is that the Infectious Disease Society of America (IDSA) has written guidelines (which are now under investigation) for insurance companies to extend coverage by and doctors to treat by that are very rigidly followed. In reality, after the mere 28 days of antibiotic therapy the IDSA recommends, many people are still very ill. Furthering frustrations, the Centers for Disease Control (CDC) uses strict guidelines as well to statistically count those who have acquired Lyme disease each year. If a particular victim does not meet each of these stringent guidelines, they are not counted as being "CDC positive", resulting in misleadingly low numbers of Lyme cases. State Health Departments are allowed to further narrow these guidelines based on their own surveillance. In short, there are many more cases of Lyme disease, coinfections, and Lyme-induced illnesses than the general public is aware of.
Inspired by The Names Project AIDS quilt created by activist Cleve Jones, the mission of the Lyme Quilt is:
*To show many people still suffer long-term illness and proof of infection after treatment
*Raise awareness that this illness costs people their quality of life
*Raise awareness that this disease can ultimately be fatal, despite popular belief
*To develop a visual pattern showcasing the horrendous length of time between onset of symptoms and diagnosis
*To create a link between Lyme-fighters to share stories and unite us in this battle
Because not only do we have our own health to contend with; we must fight every step of the way, from diagnosis, to insurance coverage, to finding a doctor willing to treat us, to receiving antibiotics or alternative treatments, to be ACKNOWLEDGED...EVERY STEP OF THE WAY. And until more people realize how many of us are out there, that battle will not get any easier for us.
Coming soon: Bibliography, How You Can Be Counted, Common Lyme Myths, and Fundraiser for the Quilt
The problem is that the Infectious Disease Society of America (IDSA) has written guidelines (which are now under investigation) for insurance companies to extend coverage by and doctors to treat by that are very rigidly followed. In reality, after the mere 28 days of antibiotic therapy the IDSA recommends, many people are still very ill. Furthering frustrations, the Centers for Disease Control (CDC) uses strict guidelines as well to statistically count those who have acquired Lyme disease each year. If a particular victim does not meet each of these stringent guidelines, they are not counted as being "CDC positive", resulting in misleadingly low numbers of Lyme cases. State Health Departments are allowed to further narrow these guidelines based on their own surveillance. In short, there are many more cases of Lyme disease, coinfections, and Lyme-induced illnesses than the general public is aware of.
Inspired by The Names Project AIDS quilt created by activist Cleve Jones, the mission of the Lyme Quilt is:
*To show many people still suffer long-term illness and proof of infection after treatment
*Raise awareness that this illness costs people their quality of life
*Raise awareness that this disease can ultimately be fatal, despite popular belief
*To develop a visual pattern showcasing the horrendous length of time between onset of symptoms and diagnosis
*To create a link between Lyme-fighters to share stories and unite us in this battle
Because not only do we have our own health to contend with; we must fight every step of the way, from diagnosis, to insurance coverage, to finding a doctor willing to treat us, to receiving antibiotics or alternative treatments, to be ACKNOWLEDGED...EVERY STEP OF THE WAY. And until more people realize how many of us are out there, that battle will not get any easier for us.
Coming soon: Bibliography, How You Can Be Counted, Common Lyme Myths, and Fundraiser for the Quilt
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