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Saturday, July 5, 2008

A Thank You...A Request.

My daughter, Anna Willo, at age 2. She's now nearly 28 and a ten-year veteran of Lyme disease. For every painful experience she has gone through, she says, "I do this for the next person coming."

You can't imagine the gratitude I feel this morning. There on page A5 of our Tacoma News Tribune was the headline, "Lyme disease mystery might have been solved," by Delthia Ricks of New York's Newsday. I know you can relate to the feeling of this being our newspaper and a major connection to our family's story. We already knew about the breakthrough (new research findings are shared quickly in the Lyme community, worldwide) and know that this is only one clue in a complex mystery of vector-borne diseases. That having been said, the research field getting pried open and public focus given to this very real and present plague is manna to us...and the thousands of other families fighting for recognition and relief.

Today my hat's off to you, Tacoma News Tribune, and I thank you from the bottom of a mother's heart.

I'd like to ask, here in front of my neighbours and on my knees (scenery-chewing, I know...but a spotlight's a spotlight!) for you to send a reporter to the private screening of "Under Our Skin" at the Harvard exit Landmark Theatre (tickets available at the theatre) on Thursday, July 24th. at 7p.m. Meet with some of the members of our Washington chronic Lyme community...the community that is invisible to the Infectious Disease Society of America.

If you don't think this is political, let me share something with you. A few weeks ago, my daughter showed me the Wickipedia (yeah, the People's Encyclopedia) page on Lyme and we were both really impressed with the work that had been done to give real information to those bitten and searching for help. There was balanced information between First Stage Lyme (an easier fix) and Tertiary or Third-Stage (chronic) Lyme.* Two days ago we went there again. Now it has been completely edited to the IDSA misinformation.

* (My daughter belongs in this latter, chronic group, which the IDSA declares doesn't exist.)

One example:
IDSA says the bullseye rash appears at least 80% of the time...and gives a narrow definition of the rash.
Truth is at least half of those bitten never saw a tick or a rash. Rashes can be non-existent, hidden (like on the scalp) or appear as bruises in those of darker skin tones.

Any real information begins to get lost now in technical language that would stop a healthy brain, let alone a brain with a bacterial inhabitant. A freeze has been put on editing and contributers to the page have been banned from Wickipedia.

The IDSA fails to mention, in its announcement of a new upcoming public review of their Lyme Guidelines, that this was an agreement to forestall a criminal investigation into financial misdeeds, arranged in a plea-bargain agreement with the Connecticut State Attorney General's Office.

Investigative reporters, I don't want you to believe me. I'm just a regular mum, in a foxhole with my daughter. There is a Pulitzer Prize-winning story wrapped-up in the "Lyme Wars" waiting for the reporter who goes beyond the sticky-tape of the IDSA's self-awarded seal of authority. The International Lyme and Associated Diseases Society's (ILADS) experts are also represented in this film, "Under Our Skin." Families who suffer have waited desperately for this movie to come out, to speak for them in a public arena. Some have died while waiting for you.

I dedicate this post to Rose, who died from chronic Lyme, April 18th., 2007.
Rest in peace Rose, the movie's out.


EmeraldPrincessOnline said...

Precious picture of Anna... Her story/your story touches all of our hearts.

Kim Thompson said...

Hello Lorraine:

I, too, was pleased seeing that article in the paper. It's big news indeed.

I think the TNT has a amazing opportunity in covering this documentary. First off, South Sounders are simply not informed what Lyme even is. NO ONE I have spoken to that lives in this community knows about it in the least, until I tell them.The few that have a general idea, have lots of misinformation. South Sounders NEED to know for their own health, the health and well being of their families, and for the health of the community. Second, I suspect there are local folks that are suffering in SILENCE. What a fine chance to give those who are struggling hope, validation, and resources. Lastly, wouldn't it be great to have the City of Destiny's paper tackle this and take the lead in the region?

All I see here is win-win. And win-win all over again.

Lorraine Hart said...

The only continent in the world without Lyme is....Antarctica. Every state in America is of the co-infections is named Washington1...because it was discovered here.

KNOWLEDGE IS POWER. When your doc tells you we don't have Lyme out tell them they are wrong and need to get The CDC reports that the possible yearly numbers for infections in the U.S. is around 200,000.

Thanks for your support!

Here's a link to an NPR interview with Pamela Weintraub, senior editor and science
journalist, Discover magazine. Author, "Cure Unknown: Inside the Lyme. Her whole family has suffered.

You can listen to this program with Real Player.

For Program On: Wednesday, July 2, 2008 at 8:00 AM

It's one of the fastest spreading infectious diseases today. After eight,
Joy Cardin's guest discusses the science, history, and politics of Lyme
disease, which has fueled a controversy that seriously undermines patient
care and treatment. Guest: Pamela Weintraub, senior editor and science
journalist, Discover magazine. Author, "Cure Unknown: Inside the Lyme
Epidemic" (St. Martin's Press).

©2008 by Wisconsin Public Radio.

Kim Thompson said...

Lorraine, I think you hit on the problem. And hard.

South Sounders don't think we have Lyme HERE (e.g. "not in our backyard, not our problem").

Clearly, we do!

Stephanie Frieze said...

I commented on the article, Lorraine, and second your emotion about the TNT sending a reporter to the movie.

I'm glad that you posted the dear picture. People need to understand that regardless of age, when a person is struck with a devastating disease it's happening to someone's baby. Your Mama Bear fight to find answers to Lyme questions has been a long hard road for both of you. Hang in there.

JosephMcG said...

I wrote the TNT editor this evening, requesting that "one of their best reporters" review the film.
Thank you, Lorraine, for the post.

Lorraine Hart said...

You guys are the best, thank you!

Did you happen to catch the craziness...the news of finding the bacterial strain that causes such a [chronic] Lyme infection and terrible illness...but chronic Lyme doesn't exist, as far as the fourteen people who made the guidelines that sit on the CDC site.


Lorraine Hart said...

Happy Update!

A rep. from Sen. Patty Murray's office will be at the screening.

JosephMcG said...

Well... time to contact PM's office and thank them and encourage them...
phone numbers... email addresses?

Kim Thompson said...

Oh, how cool is that news!!!!

M. Sugimura said...

Leading up the rear....a wonderful post, a wonderful cause (even if it did not so personally touch a member of your family) and an exquisite mother/child photo.

This disease deserves more full and complete attention by the media. I remember reading something about it perhaps twenty years ago or more in an issue of the Reader's Digest where the point of the story (even then) was the lack of good information available about it and the at the time known risk factors which were then basically non-existent.

Victims and families of "orphan" diseases and conditions are continually overlooked and forced to do what they can to get more spotlights on what the general profession and public is often willing to view in light of overall health care system concerns as problems of a small, fringe (non-majority) groups.