KD AWARENESS

How we can all help raise KD awareness, by Jane C. Burns, M.D.
Finding your voice and being heard: Promoting awareness of KD....
Jane C. Burns, M.D.....
2006....
.. ..
"The way we change the world is one person at a time."....
Premise: Everyone has a voice, however soft, and can be heard.....
.. ..
Level I: The Whisper....
1) Tell a neighbor about KD....
2) If your child is recovering from KD, go out of your way to work his/her illness into every conversation:....
Dry cleaner: How are you today?....
KD parent: Pretty tired, my child has been ill.....
Dry cleaner: Really, hope it’s not too serious.....
KD parent: My child has ....Kawasaki.... disease. Every heard of it? It’s a strange disease that is now the leading cause of acquired heart disease in children in the ....U.S....., etc.....
3) Tell your church/ synagogue group, people at work, tennis partner, relatives about KD....
4) Help your older child do a project for science class on KD. Use the UCSD, AHA, or other websites for color photos and information.....
5) Add this to your signature on your e-mail so that you automatically send it with each message:....
"Ask me about Kawasaki Disease! The way we change the world is one person at a time." ....
....
Level II: In a Louder Voice....
1) Contact your local health dept. and find out if KD is a reportable disease in your state. Only 22 states currently require the reporting of KD by law. Find out which hospitals in your area see the greatest number of KD patients. Calculate the anticipated number of KD cases/year in your community by contacting managers of local data bases who make population estimates for local planners and government. Find out how many children under the age of 5 there are in your community. Estimate an average attack rate for KD at 20/100,000 and do the arithmetic. Are the rates for diagnosed KD patients low or high in your community? Discuss these results with the epidemiologists at the health dept.....
2) Contact the pediatric infectious disease specialist at the hospital that sees the most KD patients and volunteer your time for any research projects. Frequently researchers would like to have someone to help call back families to participate in research studies, organize a data base, send out mailings, etc.....
3) Contact your local AHA office and find out about participating in fund raising activities, Walk-a-thons, etc. The AHA is an important supporter of KD research and educational activities.....
Make a T-shirt for the Walk-a-thon that says, “Ask me about ....Kawasaki.... disease!” on the back or order T-shirts from the KD Foundation (kdfoundation.org). ....
4) Write to your representatives in Congress and your senators and ask them to support bills for medical research. Give them some information about KD so that staffers can educate themselves. Include one of the educational website addresses for KD.....
5) Order the “Ask me about Kawasaki Disease” button from the KD Foundation and wear it when you have the energy to talk to strangers.....
.. ..
Level III: The Shout....
1) Ask your local Health Dept. of they would be willing to print up flyers on KD in a format appropriate for your community. Use the San Diego English-Spanish flyer as a model. Next, mobilize a group of parent volunteers to distribute the flyers. Consider distributing flyers just prior to "peak" KD season, usually Jan.-April in many communities. Suggestions for distribution include:....
a) Counter of local pharmacy where you wait for your prescriptions. Most pharmacists are happy to have a stack of flyers available for customers.....
b) High-end children’s clothing stores: Gymboree, Baby Gap, etc.....
c) Contact local school board and ask if flyer can be included with the new student packet that is distributed to families of prospective kindergartners during the summer....
d) Pediatrician or family practitioner office waiting rooms. Parents are happy to have something to read during the long waits. This has the added advantage of increasing physician awareness about the disease.....
e) Day care or child care centers....
f) Teen parent programs through the school system....
2) Contact your local TV station and ask if they would do an educational spot on KD. It helps to have a KD expert in your community. Offer to have you and your family interviewed about KD and your child’s illness. TV stations can actually show photographs directly from the UCSD website to illustrate the features of KD.....
3) Design a catchy educational poster about KD that could be posted on community bulletin boards in churches, schools, businesses. Include the KD Foundation website where people can go for more information.....
4) Become trained as a lay community health worker and give lectures to local groups such as school nurses, teachers, service clubs, church groups, high school students as part of their health curriculum.....
----------------------------------------------------------------------------------------------------------------------....
Add 3 new ideas to this list and e-mail to ..jcburns@ucsd.edu... I will make sure your ideas are posted on our website.....
.. ..
1)....
.. ..
.. ..
2)....
.. ..
.. ..
3)....