Tag Archives: stories of pain

Write for Floxie Hope

Are you interested in sharing thoughts, opinions, or advice with others in the “floxie” community? Would you like to use the Floxie Hope platform to reach your fellow floxies?

If so, I would like to invite you to write a guest post for www.floxiehope.com (this site).

There is so much wisdom and insight in this community. I see thoughtful and insightful posts in the comments on this site, and in the various facebook groups that focus on supporting victims of fluoroquinolones. Unfortunately, so many wonderful, valuable comments (either on this site, or on social media) get lost as newer comments rise to the top. One way to preserve thoughtful comments is to turn them into blog posts on floxiehope.com.

I welcome all insights into fluoroquinolone toxicity to be published on floxiehope.com. Hopeful posts, or those about your recovery journey, or things that have helped you, are of course welcome. I want this site to have hope and recovery as its base. However, I also welcome posts that explore the less hopeful aspects of fluoroquinolone toxicity. If you want to write a summary of a journal article about fluoroquinolone damage, or if you want to write a post that connects the symptoms of, for example, fluoroquinolone toxicity to lupus, I’m happy to publish something like that too. I’m open to other suggestions as well.

If you are interested in writing a post for floxiehope.com, please contact me through this form:

Thank you in advance for any consideration that you give to contributing to floxiehope.com! All contributions to this site are greatly appreciated!

 

 

 

Tell Your Fluoroquinolone Toxicity Story

I encourage every person who has been hurt by fluoroquinolone antibiotics (or any other pharmaceutical) to tell his or her story.

Telling your story of pain caused by fluoroquinolones can be cathartic and relieving. In writing your story, you are saying to yourself and others, “My pain is real. I was hurt by a prescription drug. It happened to me. Listen, because this is important.”

These stories ARE important! Patient stories are important for advocacy, for warning others, for changing minds, and more. The world will be a better, safer, place if physicians and patients alike are aware of the adverse effects of fluoroquinolones and all other drugs. Patient stories help people to understand the severity of adverse drug reactions, so that they understand the real risk associated with each prescription drug. Neither our doctors nor our friends are psychic, and they need to be told about adverse drug reactions in order to understand them. True stories about the effects of fluoroquinolones on individual lives vividly illustrate the risks of these drugs—much more than studies, or data, or warning labels.

Patient stories can also help researchers to understand the real-world effects of pharmaceuticals, and the direction that a researcher chooses to look can be influenced by patient reports and stories.

Because patients reported their symptoms to the FDA, the warning labels for fluoroquinolones have changed to note that peripheral neuropathy is a potentially permanent side-effect of fluoroquinolones. Patient reports and advocacy also led to the November 5, 2015 FDA meeting where the Antimicrobial Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee decided that the current warnings on fluoroquinolone labels are not sufficient. We still have a long way to go, but it should be acknowledged that patients, and their stories, are driving the FDA to action, and that is quite special and unusual.

Reporting Fluoroquinolone Toxicity to the FDA

Please, even if you don’t tell your story to anyone else, report your adverse reaction to the FDA. Instructions on how to report your reaction to the FDA can be found here – http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm.

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Telling Your Story of Fluoroquinolone Toxicity on the Internet

If you would like to tell your story on a web site, there are a few options:

The Fluoroquinolone Effects Study

Please, please, please also tell your story to the researchers who are conducting the Fluoroquinolone Effects Study. The Fluoroquinolone Effects Study is being led by Dr. Beatrice Golomb and it is through UCSD. The Fluoroquinolone Effects Study is a chance to tell your story in your own words to scientists who are studying fluoroquinolone toxicity. More information about the study can be found here – http://www.fqstudy.info/Fluoroquinolone_Effects_Study/Welcome.html.

Media Coverage of Fluoroquinolone Toxicity

Hundreds of people have spoken out to the media about fluoroquinolone toxicity. Thank you to each of you who told your story! I encourage all of you to reach out to the media, because even though many of our stories have been told, many more are needed. Write letters and emails, call your newspaper editors and tv reporters. Please do whatever you can to amplify your voice when telling your story.

People are Listening

People are listening to our screams and our stories. I regularly hear from people who say something along the lines of, “I requested a safer antibiotic because I heard from you that Levaquin is dangerous.” I hear from doctors, nurses, pharmacists, and other medical professionals who are getting information about fluoroquinolone toxicity from Floxie Hope. The number of people in The Fluoroquinolone Toxicity Group on Facebook has increased steadily to almost 5,000 people. Many of those people share information about fluoroquinolone toxicity with their friends. The word is getting out, and that’s a very good thing!

Thank you to all of you who are telling your stories of pain caused by fluoroquinolones! These stories are important, and I even think that it’s healing for you to tell your story.

 

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