How Patients Can Work With The Media

/How Patients Can Work With The Media
How Patients Can Work With The Media 2017-08-20T11:16:58+00:00

Getting IC Stories In Local & Regional Papers Is A Priority

The first major story to appear in a popular magazine occurred in the early 1990’s when Marie Grimes, an IC patient in Northern California, wrote to Readers Digest and suggested that they do a story on IC. The result? Tens of thousands of patients learned that they were not alone. That letter, written from the perspective of a patient who was suffering, touched those editors profoundly.  The secret to getting media and press coverage is to share how lives have been changed, both good and bad, by life with interstitial cystitis and chronic pain.

Every year, we create a corporate press release that we send to local media outlets. We try to cover stories that are newsworthy, such as employees who are fired when they ask for restroom access or students who are punished for requesting a hall pass. But, it’s HARD to come up with a media campaign that penetrates. We need your help!

What You Can Do

  1. Print out the 2017 IC Awareness Month press release.
  2. Compose a letter sharing your pain story. See sample letter below.
  3. Make a list of the newspapers, websites, magazines and blogs that you read. Go to their websites and look for the email addresses of their newsroom, health or lifestyle feature editor.
  4. Send your letter by email with links to the press release and this website! It’s super easy to do AND could result in thousands of others learning more about IC.

Sample Letter To Media

Dear Editor (fill in name if you have one)

I write to you with a plea to share my story with “interstitial cystitis” to honor of the September IC Awareness Month campaign. I am one of millions of men and women struggling with often agonizing pelvic pain. I rarely sleep through the night.  I often struggle with basic daily functions due to severe bladder and pelvic pain. I want to live a normal life. I want to work, to socialize with my friends and enjoy the holidays. But, at the moment, I’m virtually handcuffed to my restroom.

In the USA, 3 to 8 million women and 1 to 4 million men struggle with a pelvic pain condition known as “interstitial cystitis.” We experience urinary frequency of up to 60 times a day, urgency, pressure and/or pain as the bladder fills with urine. It feels like the worlds worst bladder infection but our urine cultures are consistently negative. Rather than infection, IC patients often have injuries to their bladder or their pelvic floor muscles. Our pain has been rated equivalent to cancer pain, a point acknowledged by the American Urology Association who encourage urologists to assess and treat pain during every office visit.

Tragically, the CDC Guidelines for Chronic Pain have resulted in many patients being abruptly cut off of their pain medication, often with no warning and despite the fact that they are using low doses under the supervision of one physician and have no signs of addiction. Now that their pain is under-treated, some have had to stop working and have been forced onto disability. With the return of agonizing pain, depression, anxiety and suicidal thoughts are understandable.

We join experts around the country in asking the CDC to revise their current guidelines with the help of chronic pain experts to focus on the individual needs of patients struggling with chronic pain. Research demonstrates that very few chronic pain patients become addicts. Rather, it’s the illegal drug trade that is driving the majority of the opiate crisis in America.

Please help us educate both health providers and the community at large about the needs of men and women struggling with pelvic pain. I’ve attached our 2017 press release and you can find yet more media materials at: www.icawareness.com. Interviews with national specialists are also available.

Did They Do A Story? Please Tell Us About It!

Please send a link to the story if available on-line to us so that we can share your success. Email it to – info@icawareness.org

If you have a print version, please fax a copy of the story to: 707-538-944 OR mail it to: IC Awareness Month campaign, 5636 Del Monte Court, Santa Rosa CA  95409