Announcement

Collapse
No announcement yet.

Lessons from The Doctors TV show: Developing an "elevator speech" about IC

Collapse
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Lessons from The Doctors TV show: Developing an "elevator speech" about IC

    I have been thinking about this from a broader perspective. The Doctors TV Show on April 16 was certainly a start and gave more attention to IC than any national program has in a long time. We need to remember that it is topics like this that OTHER shows pick up on and the ball gets rolling very quickly.

    Also, we all should think about what we might say if we ever get the opportunity to discuss this with the press or with a show like The Doctors. They call it the "elevator speech" in the business world....what can you tell people about something in the short time you have with them in an elevator car ride.

    Here are my suggestions:
    1. Give people a visual right away.
      Mention "interstitial cystitis" but quickly say it is also called "IC" or "Painful Bladder Syndrome." If you have ANY influence over production, suggest that they put the words "interstitial cystitis", "IC", and "Painful Bladder Syndrome" in some sort of text visual. You can also say that up to 11 million people* have the disease--mostly women, but men and children get it too. (*Changed data based on the RAND epidemiology study)
    2. Tell the three main symptoms.
      For example you can say, "The main symptoms are frequent urination, an unexpected urge to get to a bathroom immediately, and pelvic pain. The pain may or may not be perceived as coming from the bladder."
    3. Keep the concept simple.
      For example, "For unknown reasons, there is painful inflammation and sometimes even ulcers in the bladder lining. Patients feel like they have a bladder infection all the time, but the urine does not show bacteria if cultured."
    4. Talk about diagnosis without instilling fear.
      We don't want to stir up any more worry or frustration that a patient may already be experiencing. For example, "If your urine cultures are negative, you may want to seek the help of a urologist who specializes in bladder disorders. They will likely ask you a series of screening questions, may put a potassium solution in your bladder to see how you react, and will often do an outpatient procedure called a hydrodistention to get a better look at your bladder lining and to rule out any other bladder disease."
    5. Be very general when discussing treatments.
      It is too hard to get into everything, but diet is something someone that can help someone right away and is important to mention. For example, "The treatments vary, however dietary changes can make a huge difference in symptoms." Or, "Patients need to be "patient" in order to find a combination of treatments that can help them." You can also mention the negative effects of cranberry juice if you have time.
    6. Refer people to ICN and ICA for more information.
      People like to look things up themselves and the organizations can give them a lot more information than any of us can in a short period of time! Again, if you have any editorial control, ask that they give the full names of the organizations, their phone numbers and websites.
    7. Finally, project an image of "hopefulness."
      So many times we want to tell the world how awful we feel, but honestly, that isn't as helpful as telling people, "IC can be confusing because a person with can be very sick and not look like it. However, the good news is that they CAN get better! It just takes some time!"


    All of these are quick sound bites. We really cannot tell EVERYTHING we know, but we have to remember to point people in the right direction, since that is the most important.

    I hope that I can remember this if I am ever presented with the opportunity to talk about IC to the media again!!!
    Last edited by Julie B; 07-28-2010, 05:18 PM. Reason: fine tuning the message. ;-)
    Julie Beyer, MA, RDN
    IC Dietitian, Patient Advocate, Speaker, & Author


    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

    ........ ........


    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter


    *Let's Connect!*


  • #2
    That's an excellent idea. One thing I have noticed since I developed IC is how little people know about it. When I talk about my MS symptoms people have at least heard of it. With IC the resspone is either "what's that" or "you've got a bladder infection I heard cranberry juice prevents those."
    Natalie

    I am multi-diseased with : MS, IC, IBS, and PDF

    Diagnosed with IC - May 2006 IC symptoms : burning and frequency

    Diagnosed with MS - March 2004 MS symptoms numbness in arms and legs, muscle weakness, major lack of bladder control and increasing bowel control problems. I wear Depend underwear 24/7.

    Diagnosed with IBS - Sept 23, 2008

    Diagnosed with PFD - Oct 1, 2008

    Divorced Oct. 2009

    IC Meds

    Elmiron
    Hydroxyzine
    Elavil
    Lortab for pain
    Uristat

    MS Meds:

    Betaseron
    Novantrone
    Corticosteroids
    Skelaxin ( muscle relaxer)
    Neurototin for pain


    "For God so loved the world, that he gave his only begotten son, that whosoever believeth in him shall not perish, but have everlasting life." -John 3:16

    The Serenity Prayer:
    God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

    Comment


    • #3
      JULIEB, perfectly stated. I'm going to print what you have just written and give to my family. It's not that I don't have there support, but I know they are still trying to understand exactly what is going on. They know something is wrong because I have lost ALOT of weight since being diagnosed. I always love reading your posts. You write exquisitely.
      Last edited by c2miracle; 04-19-2009, 08:00 AM. Reason: mispelled word

      Comment


      • #4
        Excellent points, Julie!

        I think there is something else we need to keep in mind when trying to get the media to air/publish info on IC. They need to be told WHY it is important for them to spend money and resources to air a program or publish an article about IC.

        We all would like greater awareness of IC and understanding of what we as patients go through. However,drumming up sympathy is not a convincing reason for television or print media to tell the IC story. What is important is to inform the public so fewer IC sufferers go undiagnosed. This is an important public service function. IC is NOT a rare disorder. We now know approx. 2 million Americans have IC and that figure may actually be as high as 14 million. That's a lot of people. Making people aware of this fairly COMMON disorder is important so those who begin to suffer the symptoms will know IC exists, what the symptoms are and will put 2 and 2 together and seek proper medical attention for a diagnosis and treatment the minute they experience symptoms. We now know the sooner a patient is diagnosed and begins treatment, the greater the chance for a good prognosis. We need to inform the media of the need for the public to have this information. Our desire for better understanding will come as a secondary result of increased public awareness.

        When we request television coverage or printed articles we need to be very clear we are making a public service request to increase the public's awareness of IC and how important it is for millions of people to get this information.
        Last edited by Annie2; 04-18-2009, 09:58 AM.
        Annie

        IC
        Ulcerative Colitis and IBS
        Pelvic Floor Dysfunction

        _________________________________________________________
        Retirement is great! Work is highly overrated!!!
        ---My dear hubby

        ________________________________________________________
        Never go to a doctor whose office plants are dead.
        ---Unknown

        Comment


        • #5
          Article About IC and Diet on AOL

          AOL Health

          I told you all that The Doctors was just the beginning! The problem is that they say cranberry juice is GOOD. PLEASE everyone, post back letting them know that is TERRIBLE information!!!!!
          Julie Beyer, MA, RDN
          IC Dietitian, Patient Advocate, Speaker, & Author


          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

          Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

          ........ ........


          Other IC Diet Resources:

          IC Diet Webinar
          IC Diet Website
          For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
          Free IC Diet Booklet: What Can I Eat?
          Confident Choices IC Diet Blog
          IC Diet Newsletter


          *Let's Connect!*

          Comment


          • #6
            I added a comment, but I assume they are moderating comments since it didn't actually post at the time. I'll check later.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              Arrrrrgh! The cranberry juice advice. That really gets old explaiing to people how bad it is for IC patients. Maybe someday word will get out that IC isn't a bladder infection. Let's do everything we can to spread the word. Btw Julie, your original post was excellent. Thanx for sharing.
              TexasHoney

              Let's keep praying for a cure.
              IC Symptoms began in early 2001
              Divorced : Sept 2002 (Partly due to IC)
              Diagnosed with IC in April 2004
              Most recent injury - Rupurtured Left Achilles Tendon
              Wed Jan 28 2009
              (Ice Storm Accident)
              2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
              Other Injuries
              Broken Left Ankle - July 2004 ( fell off ladder)
              Broken Left Ankle (Again) - May 2005 (car accident)
              Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

              CURRENT MEDS
              Elmiron, Pyridium

              Comment


              • #8
                Send your story to Mystery Diagnosis on Discovery Health

                If you would like to submit your story to Mystery Diagnosis for Discovery Health, please call 1-866-686-7466.

                My IC has never been as bad as some of yours so it wouldn't make as great of a story, but many of you have some very interesting stories about your journey to get diagnosed.

                Go for it!
                Julie Beyer, MA, RDN
                IC Dietitian, Patient Advocate, Speaker, & Author


                Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                ........ ........


                Other IC Diet Resources:

                IC Diet Webinar
                IC Diet Website
                For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                Free IC Diet Booklet: What Can I Eat?
                Confident Choices IC Diet Blog
                IC Diet Newsletter


                *Let's Connect!*

                Comment


                • #9
                  I'd love to be on Mystery Diagnosis but I've written many times and gotten nowhere with that show......darn!

                  Maybe After My Pudendal Nerve Decompression Surgery, I will try again with your approach, Thank You!

                  Kara
                  Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                  "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                  I also have some journals of my journeys, past and some present at:
                  http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                  Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                  Comment


                  • #10
                    The Doctors show is going to do another show

                    Please see my post at this link:

                    http://www.ic-network.com/forum/show...431#post484431
                    Julie Beyer, MA, RDN
                    IC Dietitian, Patient Advocate, Speaker, & Author


                    Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

                    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

                    You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

                    ........ ........


                    Other IC Diet Resources:

                    IC Diet Webinar
                    IC Diet Website
                    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
                    Free IC Diet Booklet: What Can I Eat?
                    Confident Choices IC Diet Blog
                    IC Diet Newsletter


                    *Let's Connect!*

                    Comment


                    • #11
                      Yes, I wish the word would get out about this chronic condition. So many people think that they can tell me to drink cranberry juice, or cranberry pills, and they think that IC is just a bladder infection. And I also get "What is your urologist doing? Why can't he cure this? Maybe you need to go to another Dr." When I explain that my urologist is one of the top 100 Dr.'s in Arizona, and that another urologist is going to have to start the tests all over because that is what they do, I get a blank stare.

                      Comment


                      • #12
                        I wish somehow Dr. Oz would cover it on his show. He is very detailed in his explanations of medical problems.
                        treatment:
                        -I follow the IC diet to the letter
                        -acupuncture and chinese herbs
                        -Prelief
                        -UTA
                        -instillations as needed
                        -beginning yoga and specialized yoga for breathing and relaxation
                        -Wellbutrin
                        -Klonopin


                        main symptoms: pain and burning

                        Comment


                        • #13
                          I agree Penney and will try to contact him via Email. Thought of this as well but it is so rarely correctly diagnosed....well, maybe that in itself might spark his interest. If we get enough of us, male and female, perhaps we could pique his brain. We will try and if I find a connection will relay it to you all.

                          Comment


                          • #14
                            Hi Julie~
                            will you be posting the new date in which the DR's will air IC again, I would love to see it. I emailed the DR's, DR OZ, and Oprah when my Mother became ill. I haven't heard a word. Hope to hear from you. Carolyn M

                            Comment


                            • #15
                              Awareness

                              I think we all need to continue to try to get awareness out there. I have written the Dr. Oz show YET AGAIN to try to get him to have something about this disease.

                              I think we should contact people from the magazines we read, etc. Anything and anyone who could help get the word out about this. It makes me so frustrated about how nobody gets it and how could they possibly? They problems we have don't make any sense and people just glaze over if you try to explain it.
                              treatment:
                              -I follow the IC diet to the letter
                              -acupuncture and chinese herbs
                              -Prelief
                              -UTA
                              -instillations as needed
                              -beginning yoga and specialized yoga for breathing and relaxation
                              -Wellbutrin
                              -Klonopin


                              main symptoms: pain and burning

                              Comment

                              Working...
                              X