Kawasaki Disease Resource List
Thanks for visiting the Desperately Seeking Kawasaki page on my blog. This is where I keep an updated list of all the resources I can find about Kawasaki Disease (Kawasaki Syndrome). If you have any information you would like to see added here, please contact me about it. If you have a story to tell, leave it in the comments. The more information we have, the more people know about KD, the more kids we save. For more information on KD and to connect with other people affected by KD, please visit my Facebook page Desperately Seeking Kawasaki. You can also follow me on Twitter at @seekingkawasaki.
Table of Contents
- Kawasaki Disease - General Information
- Kawasaki Disease - Specific Information
- Recurrent Kawasaki Disease
- Kawasaki Disease Foundations
- Kawasaki Disease Organizations
- Kawasaki Disease Projects and Research Studies
- Kawasaki Disease Hospital Clinics and Programs
- Kawasaki Disease Personal Websites and Blogs
- The Grey Seeker's Posts about Kawasaki Disease
- Kawasaki Disease Facebook Pages
- Kawasaki Disease Facebook Groups
- Kawasaki Disease on Twitter
- Kawasaki Disease in the News
- Scientific Advancement
- Personal Interest
- Celebrity Sightings
- Intravenous Immunoglobulin (IVIG) Information
- Peer Reviewed Articles on Kawasaki Disease
Kawasaki Disease - General Information:
Basic information about what Kawasaki Disease is, from medical and hospital websites. If you are a parent or someone who needs to learn about Kawasaki Disease FAST, start here.
Kawasaki Disease - Specific Information:
These websites go into more specifics about KD. They may be more geared towards medical personnel and their language may be a bit more technical.
Recurrent Kawasaki Disease
In rare cases, Kawasaki Disease can strike again months to years after the initial attack. Recurrence rates vary worldwide from less than 1% to as much as 8%. If you feel your child may be experiencing a recurrent case of Kawasaki Disease, contact your health care practitioner immediately. All of the following articles, interviews, and blogs involve children who have had KD more than once.
Kawasaki Disease Foundations:
Kawasaki Disease Organizations/Charities:
- KD Canada
- Kawasaki Disease Canada
- Kawasaki Support Group UK
- Kawasaki Syndrom Forum (German)
- Pegasus Therapeutics
- Give Kawasaki Disease patients the support they so badly need. Petitioning NHS Clinical Reference Group for Paediatric Medicine. Change.org.
- Sarah Chalke's Kawasaki Disease Challenge on CrowdRise (Fundraiser for Diagnostic Test!)
Kawasaki Disease Projects and Research Studies:
These are links to programs that are currently researching KD. Some are currently seeking participants in their studies so KD survivors should check this out.
Kawasaki Disease Hospital Clinics and Programs:
Hospitals are now starting to offer specific and specialized treatment for KD. Some of these hospital clinics and programs staff a KD Specialist 24 hours a day, who is available for physician-to-physician consultation, if acute KD is suspected. Each of these clinics also has information for parents looking for a second opinion.
Kawasaki Disease Personal Websites and Blogs:
KD survivors and KD parents' personal experiences with KD.
- Todd's Story
- A Kawasaki Heart
- Molly's Heart Story
- Evan's Updates
- Cooper 5K & Fun Run
- Motorcycles Don't Cause Kawasaki Disease
- Isaiah's Journey
- Team Liam
- Freya's Story
The Grey Seeker's Posts about Kawasaki Disease:
This is everything I've personally written about KD.
Kawasaki Disease Facebook Pages:
Facebook pages are loosely grouped into categories – foundations/organizations, regional support, personal pages, etc.
- Kawasaki Disease Foundation
- Kawasaki Kids Foundation
- Kawasaki Disease - Raising Awareness
- Kawasaki Disease Foundation - Australia
- Team Kawasaki Disease - AL
- Team Kawasaki Disease - IL
- Team Kawasaki Disease - Colorado
- Team Kawasaki Disease - New Mexico
- Team Kawasaki Disease - Georgia
- Team Kawasaki Disease - Virginia
- Kawasaki Disease Awareness Team Solano
- South Texas Kawasaki Disease Parents
- North Texas Kawasaki Disease Group
- Central Texas Kawasaki Disease Support Group
- Kawasaki Disease Awareness OHIO
- Kawasaki Disease MN Support Group
- Kawasaki Support Group UK
- Doenca de Kawasaki
- Kawasaki Disease Canada
- KD Canada
- Kawasaki Disease in Saskatchewan
- Kawasaki Syndrom Forum (German)
- Kawasaki Disease Support Group Singapore
- Kawasaki disease (川崎症)-Taiwan-郭和昌醫師(Ho-Chang Kuo)
- Kawasaki Kids Club
- Kawasaki Disease Foundation Gala
- The Wish of Innocents (KD Documentary)
- Pegasus Therapeutics
- For mothers who had a child with Kawasaki disease
- Isaiah's Kawasaki Disease Journey
- Madison’s Journey with Kawasaki Disease
- Team Liam
- Cooper 5K & Fun Run
- Don't STOP the BEAT 5k
- Quianu Robinson's Kawasaki Disease Awareness Page
- Prayers for Caleb
- Prayers for Peyton Brown
- Prayers for Paxton
- Prayers for Rylee
- Kawasaki Disease DFW: Olivia’s Story
- Kawasaki Disease Foundation NSW in Memory of Gemma Locock
- Melissa's Kawasaki Campaign
- Freya's Story
- SANTI'S Kawasaki Disease Journey
- Enfermedad Kawasaki
Kawasaki Disease Facebook Groups:
- Kawasaki In Canada (Open to Anyone)
Kawasaki Disease on Twitter:
- Kawasaki Kids@KawasakiKidsFou
- Kawasaki Dis Canada@KawasakiDisCan
- KD Kids Guild@KDKidsGuild
- KD Foundation@TheKDF
- Isaiah's KD Journey@IsaiahsJourney
- KDCanada @KDCanadaPA
- Kawasaki Disease AL@TeamKDAlabama
- Freya's Story@freya_story
- Seattle Children's@seattlechildren
- VasculitisFoundation@VasculitisFound
- WishofInnocents@WishofInnocents
- Jesse Hoyt @JesseHoyt2012
- Andrea Salgado @DrBronquio
- KDA @Hearts4Kawasaki
Kawasaki Disease in the News - Scientific Advancement
- Genetic variation may explain Asian susceptibility to Kawasaki disease. Medical Xpress. January, 2016.
- Genetic variation may explain Asian susceptibility to Kawasaki disease. Eureka Alert. January, 2016.
- Genetic Variation May Explain Asian Susceptibility to Kawasaki Disease, Says Study. Functional Genomics. January, 2016.
- Fever after IVIG for Kawasaki disease not predictive of coronary artery abnormalities. Helio. October, 2015.
- Rady Children's receives grant for KD research. The San Diego Union-Tribune. September, 2015.
- Respiratory virus positivity should not exclude Kawasaki disease. Two Minute Medicine. August, 2015.
- Blowing in the wind? The mystery of Kawasaki Disease. New Statesman. July, 2015.
- The mystery of Kawasaki disease. Ars Technica. July, 2015.
- Understandingi Kawasaki Disease. Today Online. March, 2015.
- Kawasaki Disease Symposium shares information, research on once mysterious disease. American Heart Association News. February, 2015.
- Cardiovascular events in Kawasaki Disease not significantly elevated over controls. 2 Minute Medicine. January, 2014.
- Overtreatment Okay in Possible Kawasaki Disease. American College of Emergency Physicians. June, 2007.
Kawasaki Disease in the News: Personal Interest
Videos:
- Montreal mother urges parents to sign kids up for organ donation. CTV News Montreal. January, 2016.
- Texoma Mom Raising Awareness for Rare Illness Affecting Son. Texoma News 3. January, 2015.
Print & Web Stories:
- Redditch parents push for awareness of rare disease after two-year-old daughter taken seriously ill. Evesham Journal. January, 2016.
- This 11-year-old metal detector enthusiast is raising money for a hospital which saved him. Wales Online. January, 2016.
- Montreal boy awaits heart transplant. CBC News. January, 2016.
- Nuneaton's Micky to release debut song. Nuneaton News. January, 2016.
- Mum pleads for parents to learn more about rare Kawasaki disease after son's diagnosis. Metro. December, 2015.
- Kawasaki disease: know how to spot signs of serious illness, urges mum. Daily Echo. December, 2015.
- Brave Doncaster baby is a Christmas miracle. The Star. December, 2015.
- Doncaster baby youngest with rare disease. The Star. September, 2015.
- Warren Clinic and former doctor found negligent in death of 8-month-old; jurors assess damages at $5 million. Tulsa World. September, 2015.
- $5 Million Verdict Against Pediatrician Who Treated Fatal Disease with Tylenol. The National Trial Lawyers. September, 2015.
YouTube Stories:
Blogs:
Web Radio Interviews:
Kawasaki Disease in the News: Celebrity Sightings
Intravenous Immunoglobulin (IVIG) Information:
Information specific to this very important medication for Kawasaki Disease. Additional information can be found under Peer Reviewed Articles.
Peer Reviewed Articles on Kawasaki Disease:
I try to always include the full-text unless it's not available. If only the abstract is linked, it means you have to pay for the full-text. Sometimes there will be a 1 or 2 page preview of the article. If you are writing a paper on Kawasaki Disease and are looking for sources – they should come from peer reviewed articles like these.
Published in 2016:
- Kawasaki disease without fever: a mild disease? Annals of Paediatric Rheumatology. January, 2016.
- Variations in ORAI1 Gene Associated with Kawasaki Disease. PLoS ONE. January, 2016.
- Renal artery injury caused by Kawasaki disease. Chinese Journal of Contemporary Pediatrics. January, 2016.
- ST-elevation myocardial inforction in a young adult secondary to giant coronary aneurysm thrombosis: an important sequela of Kawasaki disease and a management challenge. (Summary Only). BMJ Case Reports. January, 2016.
- Cardiopulmonary Function, Exercise Capacity, and Echocardiography Finding of Pediatric Patients With Kawasaki Disease: An Observational Study. Medicine. January, 2016.
- Nonresponse to intravenous immunoglobulin and coronary artery dilatation in Kawasaki disease: predictive parameters in Korean children. The Korean Circulation Journal. January, 2016.
- Clinical Characteristics of Kawasaki Disease in Infants Younger than Six Months: A Single-center Study. The Korean Circulation Journal. January, 2016.
- Sensorineural hearing loss in Kawasaki disease. Annals of Pediatric Cardiology. January, 2016.
- An adolescent with Kawasaki disease. (Abstract Only). Indian Pediatrics. January, 2016.
- Clinical and Epidemiological Characteristics of Kawasaki Disease with Special Reference to Cardia Involvement. Journal of Evidence Based Medicine and Healthcare. January, 2016.
Published in 2015:
- Methods for Diagnosis of Kawasaki Disease. United States Patent Application. December, 2015.
- Aortic Inflammation Continues in Patients with a History of Kawasaki Disease and Persistent Arterial Aneurysms. Circulation. December, 2015.
- Long Term Follow-up Study of Patients with Kawasaki Disease. (Abstract Only). Korean Association of Medical Journal Edition. December, 2015.
- Cardiac Complications in 38 Cases of Kawasaki Disease with Coronary Artery Aneurysm Diagnosed by Echocardiography. (Abstract Only). Echocardiography. December, 2015.
- Ethnic Kawasaki Disease Risk Associated with Blood Mercury and Cadmium in US Children. International Journal of Environmental Research and Public Health. November, 2015.
- Kawasaki disease in a healthcare provider: an adult case in a paediatric resident. (Summary Only). Cardiology in the Young. November, 2015.
- The Validity of a Scoring System in Predicting Intravenous Immunoglobulin Treatment Failure in Children with Kawasaki Disease. Archives of Pediatric Infectious Diseases. November, 2015.
- Association of Attention deficit hyperactivity disorder and Kawasaki disease; a nationwide population-based cohort study. Epidemiology and Psychiatric Sciences. September, 2015.
- Adult-onset Kawasaki disease (mucocutaneous lymph node syndrome) and concurrent Coxsackievirus A4 infection: a case report. Dove Press. September, 2015.
- Cardiovascular status after Kawasaki disease in the UK. Heart BMJ. July, 2015.
Published in 2014:
- Appendicitis as the presenting manifestation of Kawasaki disease. Pediatric Surgery International. May, 2014.
- Guidelines for medical treatment of acute Kawasaki disease: Report of the Research Committee of the Japanese Society of Pediatric Cardiology and Cardiac Surgery (2012 revised version). Pediatrics International. April, 2014.
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