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» LymeNet Flash » Questions and Discussion » General Support » Been contacted by NEWSPAPER HELP!

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Author Topic: Been contacted by NEWSPAPER HELP!
Karrie
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Member # 4305

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Ok friends, need some help here...
My local newspaper is doing an article on Lyme disease. Since I am the ONLY person with it I am going to sit down with a reporter.
Here is the problem....MY SHORT term memory, and some long term is GONE because of this disease. Please help me with what I should tell them...
Need some current information on the statistics and to be honest, I can't even remember all of the meds I have taken...Nebraska has a low rate of DIAGNOSED lyme cases....Please help.
Thanks. Karrie

Posts: 99 | From Hastings, NE USA | Registered: Jul 2003  |  IP: Logged | Report this post to a Moderator
Babygirl
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Hi! I think the most important advise that I can give you is to write down important information that you wish to pass on to the public. You may also wish to tell the reporter about your brain fogginess as part of the disease! Not only will that tell an important factor in the disease, but it will also be useful if you tell him this before the interview so you can find out the information he/she wishes to find out so that you can be prepared with the answers. I wish you luck and hope that it helps raise public awareness!
Posts: 62 | From Middletown, Rhode Island | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
cbb
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Karrie,
That's great that your local newspaper is doing an article on Lyme.

Like Babygirl said, write down a few important points you want to make.
Ex: "No test can definitively 'rule out' Lyme disease." - quote from "Tick-Spread Diseases" a brochure from the Lyme Disease Foundation, Hartford, CT.

I think it helps to have a brochure or two (from reliable organizations) to give the reporter. That takes some of the pressure off you to be accurate with the facts.

Brochures are concise & contain most of the important info: basic facts about LD, symptoms, preventing tick bites, proper removal of ticks, testing, co-infections, etc.

Lyme Disease Foundation
Phone 860-525-2000 www.lyme.org

Lyme Disease Association
Phone (888) 366-6611
E-mail: [email protected] http://www.LymeDiseaseAssociation.org

Don't know when your interview will be, but maybe you can get some brochures from these organizations or print from their website.

Up front, tell the reporter you have "Lyme fog" & how it affects your memory & ability to organize thoughts.
VERY IMPORTANT - if you don't want this part of your information in the article, tell the reporter. You have to decide....some people want to have it known, others don't.

Usually, they're looking for a human interest story so people will read the article.
They'll want to know things like where you got Lyme, how long you've had it, how you were diagnosed, how it's changed your life.

I wouldn't get into detail about antibiotics you've taken because it varies so from patient to patient & dr to dr.

To read some examples of what our papers have written, go to www.sc-lyme.org
Click SC News & you'll find a number of articles. These may give you an idea of what info they like to have.

Mis-diagnosis is a big problem for Lyme patients.
You may want to have a list of diseases that Lyme mimics most often, like Alzheimer's, ADD, Lupus, Parkinsons, Fibromyalgia, Chronic Fatigue, MS, ALS, etc, etc.

When the article comes out, I hope you'll post the link here on LymeNet so we can read it, too.
I'm sure you'll do a great job.

Concerning the presence of Lyme disease in an area, an important quote:
"Absence of proof is NOT proof of absence."

[This message has been edited by cbb (edited 15 May 2004).]


Posts: 4638 | From South Carolina | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
   

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