Julie B
04-18-2009, 05:20 AM
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. :smile tee
Here are my suggestions:
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)
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."
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."
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."
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.
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.
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!!! :smile tee
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. :smile tee
Here are my suggestions:
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)
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."
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."
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."
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.
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.
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!!! :smile tee