What Do You Do For Lyme Disease Awareness?

For everything that is related to Lyme and/or Lymeland, but doesn't fit in the other forums. Speak your mind, connect, ask help, etc.
RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: What Do You Do For Lyme Disease Awareness?

Post by RitaA » Tue 20 May 2014 19:14

Camp Other wrote:
RitaA wrote:You don't want to miss Camp Other's latest (and related) blog entry that I posted about in this thread:

http://www.lymeneteurope.org/forum/view ... f=7&t=5372
Monday, May 19, 2014

Op/Ed: Thoughts And Reflections On Worldwide Lyme Disease Awareness Protest
RitaA, see you've been posting this all over - and I agree that this thread is probably the most appropriate one. :)

I'm glad you appreciate it!

I wanted to do something for the worldwide Lyme disease awareness protest weekend, and had to do it my way by blogging, I guess.

Maybe someday I'll get out there and participate in a Lyme walk or something similar. But in the meantime, I write.
CO,

Guilty as charged -- but I really and truly didn't want anyone to miss your excellent blog entry. :)

My participation in this year's worldwide Lyme disease awareness protest weekend was limited to being physically present at the "CN Tower Lights Up Green for Lyme Disease" event. While I spent most of my time sitting on a bench speaking to a lovely young couple I had just met, it also gave me the chance to reconnect with two friends, and to meet in person someone I've grown to know over the past year or so via the internet and through e-mails.

Although I live in Toronto, just getting to the CN Tower and back home using public transportation provided me with more exercise than I typically get in a day. I guess you could call it my personal Lyme disease-related walk for the year.

Writing is something you do so well that I'm sure many of us here and elsewhere are really glad that you have chosen this means of participating in ongoing Lyme disease awareness and education. Between posting here on LNE, blogging and using Twitter, I strongly suspect that you reach a much wider audience than most of us could ever imagine doing.

Thanks again, Camp Other, for that wonderful blog entry!

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: What Do You Do For Lyme Disease Awareness?

Post by Cobwebby » Thu 7 Aug 2014 6:51

https://fbcdn-sphotos-h-a.akamaihd.net/ ... d5a89e8cd8

Ha Ha-this one is for you Camp Other. Looks like you can make the picture bigger for better viewing . Recognize who is standing next to me? Not sure why I had a picture taken with her except I figured pretty quick she was a big wig in the lyme community. I was a newbie to the game back then-in 2006! Still have the shirt-which I still wear-but it's quite faded and I'm quite jaded.

Edited to add- I look like quite the tourist in Lymeland! :bonk:
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: What Do You Do For Lyme Disease Awareness?

Post by dlf » Fri 24 Apr 2015 2:29

Bumping this for a new tick season!

In Ontario, this May we start on May 1st for another rally at the CN Tower with the sky lit in green for Lyme Awareness.

Tie a Ribbon Campaign - May 1 to 31 - people around the world will be tying green ribbons to trees, posts and fences to heighten awareness about Lyme disease. Ontario Lyme advocacy and support groups will be participating in this.

Friday, May 1st – 8 pm – Come and join us at the base of the CN Tower – wear green! Mike Mantha, MPP for Algoma-Manitoulin, is going to come and mingle with us. We hope to have some other MPPs and Toronto City councillors joining us. And, there will be a TV crew and we hope some other media types will want to come and talk about Lyme, too. The CN Tower will be flooded in green for 8 minutes every hour on the hour from 9 pm on.

On Wednesday May 6th we are heading back to the Ontario Legislature for the morning. We need all Lyme disease patients, caregivers, and advocates to help bring about real change in the way that Lyme disease is tested, treated, and diagnosed in Ontario by coming to Queen's Park on May 6th to show that you support and want to see a provincial strategy for Lyme developed and implemented.

At Queen's Park last November, MPP Mike Mantha's motion - that asked the Minister of Health to develop a Lyme strategy - was tabled, debated, and then passed unanimously. It was really an amazing thing to watch, and we impressed upon the MPPs just how much public support there is in Ontario for this strategy by simply being in the gallery in force.

However, five months later, the Minister of Health has still not officially announced that he intends to follow through with the government's commitment to create and implement a Lyme strategy. He also has not yet stated that stakeholders like CanLyme, international researchers, veterinary associations, outdoor worker and patient groups will be at the table during the development process.

We are therefore heading back to Queen's Park on the morning of May 6th to push the government to fulfill their commitment to the promised strategy!

MPP Mike Mantha will be officially asking the Minister of Health during Question Period that morning what the Minister has done so far to develop a Lyme strategy. The Minister has been notified of this in advance. It is critical that the Minister and the other members of the House see once again that Ontarians are still very concerned about Lyme and that we are demanding change in the province.

If anyone in Ontario is reading this and is available and able to get to Toronto for May 6th, we need to absolutely fill the visitors' galleries with supporters to show the government that Ontarians consider this strategy a priority. All you need to do is to come to Queen's Park and bring some friends and family.

We will meet at Queen's Park at 9:30 am on Wednesday, May 6th, and the whole event should be over by 12:30 pm. This includes our gathering after the Question Period, when we will be tying green ribbons on the posts and trees outside the Legislature. Mike Mantha has also promised to join us on the front lawn and take part in the "Lyme Sucks Challenge"!

If you are able to join us, please send us an email at:
info@ontariolymealliance.ca
with your name and address so that you can be put on the list of attendees for Queen's Park security. We will also need the same information for any guests you will be bringing. You must RSVP before May 1st in order to be able to enter the House the morning of May 6th. We'll send you more details when we receive your RSVP! Hope you can be there!

On May 14th Public Health Ontario is running another PHO Grand Rounds this year. This is an event for public health professionals, but anyone can attend or join the webinar. (Not sure about people outside of Ontario). I will go mainly to see how they handle this and how badly skewed the information being presented is this year. If possible, I will also ask questions in the hopes of enlightening any public health professionals about the realities of Lyme and how and why prevention education, testing, diagnosis and treatment need to be improved. Anyone wanting to register for this can access the registration page from this link:

http://www.publichealthontario.ca/en/Le ... TleN9LBwUw

PHO Rounds: Lyme disease update: Epidemiology and initiatives
Thursday, May 14, 2015 12:00 pm to 01:00 pm
Location: 480 University Ave, Suite 300 Toronto, ON M5G 1V2 Boardroom 350
Information By Topic: Infectious Diseases; Laboratory Testing and Sciences
City: Toronto
Event Type: In Person; Webinar
​Note: This is an open invitation, and may be forwarded to interested parties.

In recent years, Ontario has seen an expansion in the distribution of blacklegged ticks, which transmit the Borrelia burgdorferi bacteria that causes Lyme disease. This expansion has also been accompanied by an increase in human cases of Lyme disease. The presenters will focus on updated current tick and epidemiological trends, surveillance activities, the role of laboratory testing in diagnosis, and briefly discuss treatment options. This information will assist you in the public health management of Lyme disease.

Presenters: Curtis Russell and Samir Patel
Curtis Russell is a senior program specialist with the Enteric, Zoonotic, and Vector-Borne Diseases team at Public Health Ontario (PHO). In this role, Curtis provides expert advice and consultative services to Ontario's public heath units on vector-borne diseases such as West Nile virus and Lyme disease. He received his doctorate in biology from Brock University with a particular focus on mosquitoes and their potential to transmit West Nile virus to humans.

Samir Patel is an expert in vector-borne zoonotic diseases at the PHO Laboratories. He holds a doctorate in tropical diseases from the University of Toronto, where he also received his fellowship in clinical microbiology.

Public Health Ontario Grand Rounds are approved for continuing medical education from the Royal College of Physicians and Surgeons.

PHO Grand Rounds are also approved by Council of Professional Experience for professional development hours (PDHs) for members of the Canadian Institute of Public Health Inspectors (CIPHI).

Last but not least, also being lit up in green for Lyme Awareness again this year are:

Niagara Peace Bridge - May 9, 2015

Niagara Falls - May 23, 2015.

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ChronicLyme19
Posts: 564
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Location: NY, USA

Re: What Do You Do For Lyme Disease Awareness?

Post by ChronicLyme19 » Fri 24 Apr 2015 15:27

dlf wrote:In Ontario, this May we start on May 1st for another rally at the CN Tower with the sky lit in green for Lyme Awareness.

Last but not least, also being lit up in green for Lyme Awareness again this year are:
Niagara Peace Bridge - May 9, 2015
Niagara Falls - May 23, 2015.
Sweeeeeeet :mrgreen:
dlf wrote:Tie a Ribbon Campaign - May 1 to 31 - people around the world will be tying green ribbons to trees, posts and fences to heighten awareness about Lyme disease.
Oh great idea, I will steal this and suggest it to our local Lyme group. We could easily put green ribbons of flags down mainstreet.

We had our first meeting of the season for our city lyme/tick group last night and since we've only been active a few months we're still trying to get organized and hammer out our mission. Our big topic for last night was exactly this thread. How do we get the right info out to people who need it? We had a county health official come out and speak last year, but unfortunately she just spewed the same out of date information from the CDC. There were people who literally ran out crying because of seeing the incorrect information being pushed.

Activities we are working on:
-Getting mandatory tick check lessons implemented every year in the elementary schools (start from a young age to so it becomes a habit)
-Awareness posters (and now maybe also ribbons :) ) posted throughout town
-Manning a booth at the local river festivals
-Getting replications of the tick signs that are in the state parks into all the local city parks
-Having an awareness night focused on educating adults and bring in a knowledgeable speaker (or limiting the county health person to strict topics)
-Developing a simple tick bite tracker where townspeople can graph real time where people are being bitten, since the health department doesn't release the data until the following year
-Teaching folks how to prevent tick bites and safe usage of permethrin

For my own awareness efforts, I have been building a web page for our town with Lyme and tick information and making sure to cite the facts from the recent studies. Despite our county being the highest in the nation for Lyme, our local docs still are pretty clueless and many people suffer unneedlessly like I did. So we're hoping by empowering people with the right information through the website and a facebook group that we can at least get people evaluated by the right doctors sooner.

Second thing, which I just started last weekend, is "running" 5Ks with limes in my hands. :lol:
Unfortunately my Take a Bite Out of Lyme shirt did not come in in time to wear it. But it actually worked well for awareness as two friends of friends came up to me post race and said "hey, I heard you've had lyme and you seem to be doing great. I have so and so friend that is suffering and doesn't know where to turn for help." So then I follow that up with a few of the correct facts, a warning statement that not everything is lyme and that you can have lyme, something else, or permanent damage or some variety of the above, and then refer them to the town website page with all the resource links. Same thing now happens at work, since most people know I was out of work for a while and so people tend to refer them to me to help point them in the right direction.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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