An e-mail I send to Jane Burns M.D.

An e-mail I send to Jane Burns M.D. director of Kawasaki Disease Research Center
Dear Mrs. Gutierrez,thank you for your note. Glad to hear that you are promoting awareness of KD. Attached is our site which you are free to link to your site. Go to the "Finding your Voice" handout and you'll find some ideas about KD activism for parents.We would be grateful if you could let parents know about our genetics study of families with KD children. I am attaching information which you are welcome to post on your site. Parents who are interested should contact me so that we can get mailing addresses and send them a DNA kit. We collect DNA with Scope mouthwash for older children and adults and with blood drawing or mouth swabs for babies.Greg Kurio is a pediatric cardiologist at Oakland Children's Hospital and you might want to link up with him. He is one of my former fellows and very knowledgeable and interested in KD.Re: arthritis. There is no data to suggest that KD kids go one to develop arthritis syndromes any more often that the population at large. Remember that there is a huge ascertainment bias if you collect information from websites since parents with children with problems are more likely to go to websites and post their experience whereas parents whose child had no complications would be less likely. Having said that, we desperately need a national or even just a state-wide registry for children with KD but someone has to come up with the money to do it. We have the expertise to organize this but not the money.Hope this information is helpful. Keep up the good work. We are hoping to have a symposium for parents here in San Diego and have Dr. Kawasaki come over to meet parents the weekend of Nov. 7th so perhaps you could come with a contingent of parents from Northern California.All the best,Jane BurnsJane C. Burns, M.D.Professor and Chief, Division of Allergy, Immunology, and RheumatologyDirector, Kawasaki Disease Research CenterDept. of PediatricsUCSD School of Medicine/ Rady Children's Hospital San Diego9500 Gilman Dr.La Jolla, CA 92093-0641Tel 858-246-0155FAX 858-246-0156________________________________From: VANESSA GUTIERREZ [babybella1983@yahoo.com]Sent: Tuesday, April 07, 2009 11:13 PMTo: Burns, JaneSubject: KD AWARENESSMs. Burns,I am a mother to a KD survivor, my daughter had KD at 4 months old, I am doing my part in helping raise KD awareness here in San Francisco, I have started a website on KD awareness on my space, which has been very helpful to learn more about the aftermath of KD. I have a question : Would you know what are the percentage or chances of a KD child developing arthritis later on in life as a consequence of KD? I have kept in touch with a few other parents of KD children and KD survivors and about 5 of them have told me their children suffer from arthritis, I am worried that my daughter will develop this as she gets older. My pediatrician has helped, yet I am contancting you for I know you are very involved with the KD research and have been for around 30 yrs. Any of your time in reply to my question will be very highly appreciated and I will post it on my blogs as well for other parents to see. I would also like to ask how can I help with promoting KD awareness? I would be interested in participating in any of your researchs that lead to a cause for KD.Thank you for your time,VanessaBelow are the URL to my KD awareness site, my blogger is still under construction, my space page is more developed and informative I have been able to contact several KD families through it."Ask me about KAWASAKI DISEASE!the way we change the world is one person at a time."http://www.myspace.com/kawasakidiseasehttp://www.msplinks.com/MDFodHRwOi8va2F3YXNha2lkaXNlYXNlYXdhcmVuZXNzLmJsb2dzcG90LmNvbS8=