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Kawasaki |
This portion of the website is updated frequently. We welcome people who are willing to list their e-mail or postal addresses here.
We hope that by listing numerous addresses, along with pertinent information about their experience with the disease, families can find others in similar circumstances with whom to correspond.
As the list grows, our desire is to foster the formation of smaller support groups in local areas. Here is a beginning:
Billy and Lora Morrow, Florence, AL: Younger daughter, 6, was diagnosed at Day 5 in October 1996; sister, 8, was diagnosed at Day 5 two weeks later. E-mail to: LKMorrow@aol.com
Kathy Perry, Mesa, AZ: Son diagnosed at 18 months in October 1993; received IVIG treatment and aspirin therapy for six months; developed an aneurysm as a result, and has other medical and developmental problems. E-mail to: KattyKatt@aol.com
Cheryl Green, Agoura, CA: Son diagnosed at 3 1/2 months in 1992; no indication of long-term damage and has experienced no physical limitations. E-mail to: CompPln@aol.com
Veronica Tallariti, Cotati, CA: Daughter diagnosed at age 4 in 1996; treated on Day 7 with no heart damage indicated. E-mail to: JAZZeV@aol.com
Debbie Wilson, Downieville, CA: Son diagnosed at 12 months; after IVIG and aspirin treatment, developed another rash later diagnosed as psoriasis, and subsequently diagnosed with asthma. E-mail to: readymade@mail.telis.org
Brian and Myung Ahn, Foster City, CA: Daughter, diagnosed Day 5 at age 2; received IVIG treatment, but echocardiogram indicated left (4 mm) and right (13 mm) coronary aneurysms; now on anticoagulant (Coumadin) therapy. E-mail to: Ahn1@compuserve.com
Cheryl and John Crispo, Long Beach, CA: Son, nearly 10, diagnosed in 1996; recovered after IVIG treatment with no heart damage; family has observed changes in hair color and personality after the disease. E-mail to: Najbk@aol.com
Christine Cuddy, San Bruno, CA: Son contracted disease at age 2 1/2; late diagnosis (Day 9) but at age 5 is still doing well. E-mail to: CRCuddy@aol.com
Robert and Carol Freed, Santee, CA: Daughter, nearly 2 in 1993, suspected with Kawasaki on Day 2, treated with IVIG/aspirin on Day 5; although she suffered no heart damage, she's experienced chronic joint pain, eczema and other skin problems since her recovery. E-mail to: rwfreed@n2.net
Renee and Michael Johnson, Newark, DE: Daughter diagnosed on Day 9 in March 1997; allergies to antibiotics precluded IVIG treatment; awaits further echocardiogram follow-up. E-mail to: SWhita6403@aol.com
S. Singleton, Daytona Beach, FL: Son, nearly 6, diagnosed on Day 5 and treated on Day 8; no heart complications, but he reports feeling tired. E-mail to: hal-cln-inc.1@worldnet.att.net
Ana Maria Bassani, Jacksonville, FL: Son received IVIG treatment on Day 8 in March 1997; convalescent symptoms have included joint pain, a sense of imbalance and light sensitivity. E-mail to: Cybermomm@aol.com
Bill Martin, Miami Springs, FL: Son, age 2 1/2, needed two IVIG treatments. E-mail to: bmartin@rccl.com
Todd and Dwin Kwiatkowski, Orlando, FL: Son, 33 months, diagnosed in November 1997 on Day 5 after a round of antibiotics (Biaxin and Keflex); switched to I.V. antibiotics (Clindamyacin) but fever persisted and rash worsened; IVIG/aspirin treatment given; fever, rash returned after discharge and second IVIG dose given with aspirin; echocardiograms have shown no heart damage. Tkwi@aol.com
Susan Rufener, Port Charlotte, FL: Son, nearly 7, diagnosed on Day 3 after 2 misdiagnoses; hospitalized on Day 4, received IVIG on Day 5; no permanent damage detected at initial echocardiogram or at six-week follow up; previously had suffered severe allergic reaction to Ceclor 2 and is allergic to cephalosporin antibiotics. E-mail to: timberwolf@thenuthouse.com
Carrie and Steven Page, Tampa, FL: Son, diagnosed at 30 months in November 1996; taken off aspirin therapy when May 1997 echo showed no heart damage. E-mail to: pagec1@mail.firn.edu
Angela and Robert Keaton, Tallahassee, FL: Daughter, age 4, receives early treatment, no damage evident at three-week exam. E-mail to: rkeaton@garnet.acns.fsu.edu
Amy Turner, Tavares, FL: Son, age 1, contracted disease in 1995. E-mail to: penpinch@gate.net
Dale Douglas, Marietta, GA: Son, 12, admitted in July 1997; diagnoses of contact dermatitis, strep throat, scarlet fever preceded; received aspirin, two IVIG treatments and antibiotics; residual hearing loss in right ear and partial paralysis of right side of face have nearly cleared. E-mail to: daledouglas@worldnet.att.net
Scott and Elizabeth Lane, Atlanta, GA: Son became ill on first birthday in January 1997; following IVIG and six months of aspirin therapy, no cardiac damage is evident. E-mail to: scott.beth.lane@mindspring.com
Vicki and Dale Machado, Kaneohe, HI: Coordinate the Kawasaki Families' Network; daughter developed aneurysms and now is on anticoagulant therapy. E-mail to: kawasaki@compuserve.com
John Garrett, Madison, IN: Daughter diagnosed at age 3 and was treated on Day 6; no cardiac involvement. E-mail to: jcgarret@seidata.com
Roger and Kirsten Williams, Fort Dodge, IA: Son, age 2 1/2, diagnosed on Day 5; no cardiac involvement indicated so far. E-mail to: veisha@dodgenet.com
Marcia and Bruce Novotny, Shawnee, KS: Daughter, age 6, diagnosed January 1997 about 20 days into illness; no IVIG recommended; developed three large aneurysms; continues on aspirin therapy. E-mail to: mkruse@kcnet.com
Brian and Benedetta Stilwell, Bardstown, KY: Daughter diagnosed at age 2 in 1984; two weeks of fever 102 or higher; treated with aspirin; no heart damage; other symptoms, including joint pain and light sensitivity, disappeared in six months. E-mail to: brians@bardstown.com
Jeffrey Johnson, Leominster, MA: Daughter, 4, diagnosed December 1997 on Day 4; after IVIG/ASA treatment, felt tired and irritable; echocardiogram showed slight swelling of heart valve that could be congenital. E-mail to: jjohnson@net1plus.com
Nancy Ingram and Bill Corvene, Melrose, MA: Daughter, age 5 1/2, diagnosed in November 1997 on Day 5 and treated by IVIG on Day 6; incomplete response led to second dose on Day 9; third echocardiogram showed dilatation of one coronary artery and an aneurysm on another. corvene@aol.com
Ricky and Michelle Arevalo, 48 Hardy St., Methuen, MA 01844: Daughter contracted disease at age 3 in August 1996; almost a year later, doctors indicated that son, 5, also had suffered a mild case about a week earlier than daughter; both children have persistent joint pain. Father speaks both Spanish and Portuguese, for any needing translation.
Bobbie Carder, Cumberland, MD: Grandson diagnosed July 1997 on Day 9; received IVIG and aspirin therapy; no cardiac involvement, but experienced skin problems. E-mail to: bcarder@netbiz.net
Steve and Pat Jessee, Ellicott City, MD: Son, 20 months, diagnosed after 10th day of illness and suffered from debilitating arthritis; no coronary damage but was diagnosed with pervasive developmental disorder (autism) at age 4 1/2. E-mail to: speeds@home.com
Ronna and Hyatt Dixon, Frederick, MD: Son, adopted from Korea in May 1997, was treated on Day 5, at 7 months of age; no long-term damage found so far in echocardiographic follow-up. E-mail to: HDcharts@aol.com
Patricia and Tully Brown, Millersville, MD: Son, 3 1/2, treated on Day 20 in July 1997, following treatment with erythromycin and vancomycin. Atypical presentation included double pneumonia. First echo shows moderate artery dilatation. Received two IVIG treatments. Advice is welcome. E-mail to: tullybrown@aol.com
Renee Phillips, Perry Hall, MD: Son, age 2, diagnosed on Day 9 in April 1996; suffered a relapse two weeks later. E-mail to: AmazonRMP@aol.com
Donna and Johnny RidgeWay, Silver Spring, MD: Son, 10, diagnosed December 1997; received IVIG/aspirin, remains on aspirin and velocef. E-mail to: dena@the-hermes.net
Vinnie and Rachel Caliendo, 20 Blueberry Pines Drive, Kennebunk, ME 04043: Son, then age 4, had already developed a left coronary artery aneurysm by Day 2 when the disease was diagnosed in 1990; he received three IVIG treatments; today he's well, although he remains on low-dose aspirin therapy for the aneurysm. E-mail to: twinners@cybertours.com
Darlene Schink, New Portland, ME: Daughter at age 2 1/2 diagnosed with Kawasaki Syndrome in 1992; no lasting heart complications, but has been diagnosed with asthma and allergies. E-mail to: magdie@tdstelme.net
Greg and Cindy Nyhoff, Montague, MI: Son, age 9 weeks, diagnosed with KD in 1990 after prompting from parents who'd read about it; received two IVIG treatments and aspirin; small aneurysms discovered three weeks later but soon regressed; remains on aspirin therapy. E-mail to: cindyn1@aol.com
Jill Fellwock, Novi, MI: Son was ill in 1983 at age 3; disease not diagnosed until third week and IVIG treatment not yet recognized; developed a giant coronary arterial aneurysm that still persists; no other cardiac symptoms. E-mail to: JFellwock@aol.com
Ronne Robinson, Kansas City, MO: Daughter contracted disease at 15 months, had four IVIG treatments, developed coronary artery dilatation and mitral regurgitation; on aspirin therapy. E-mail to: R516626@aol.com
Jeff and Alice Asbed, St. Louis, MO: Son, 4, diagnosed with Kawasaki in July; IVIG given on Day 7 or 8; echocardiagram showed no heart damage. E=mail to: jeffazi@primary.net
Ritter Family, St. Louis, MO: Daughter developed Kawasaki in April 1995 at age 13 months, on Day 5; four IVIG treatments didn't arrest symptoms; after blood transfusion complications developed that required tests (CAT scan, X-rays, bone marrow, spinal tap) and surgery to remove lymph nodes for observation; later determined reaction due to anaphylactic reaction to vancomycin (septic shock); finally recovered, with no heart problems, but at age 2 started having absence seizures and has exhibited lag in speech and language development. E-mail to: FangRitter@aol.com
Jule and Jeff Baxter, Greenville, NC:Daughter, age 2 and of half Filipino ancestry, 2, diagnosed in July 1997 (5 days of fever, rash and redness, coupled with exposure to a tick-ridden dog, prompted misdiagnosis with Rocky Mountain spotted fever in June; exhibited bruise-like rash around her mouth; treated for RMSF with doxycycline, but test proved negative; irritability, light sensitivity, peeling fingers and toes led finally to KD sed rate/platelet tests and, after more delays, the diagnosis; echocardiogram showed no evidence of coronary inflammation. E-mail to: JulesG1969@aol.com
Matt and Melanie Pracht, Laurinburg, NC: Son, 4 1/2, contracted illness in October 1996, diagnosed on Day 3; IVIG/aspirin treatment administered; a temporarily "cloudy" chest X-ray led to a hospital transfer and another IVIG dose; echocardiograms have shown no heart damage; congenital defects: sitis inversis and polysplenia. E-mail to: mpracht@nconline.com
Jean Paroline, NY: Son diagnosed in November 1996 at age 4; arterial swelling detected; initially given Persantin instead of aspirin due to flu exposure; aneurysm developed, and after shift to aspirin regimen the swelling increased, then decreased; months later he grew tired and pale, and anemia was diagnosed. E-mail to: Halsey@Warwick.net
Wendy Portney, West Nyack, NY:Daughter diagnosed with Kawasaki Syndrome in 1997. E-mail to: Mportnt@aol.com
Michelle and Kirk Whitaker, Carlisle, OH: Son, age 2 1/2, diagnosed on Day 5 in April 1997; following IVIG/ASA treatment, three echocardiograms show no heart damage; doctors now checking into blood found in his urine. E-mail to: Derek9594@aol.com
Chris and Holly Jackson, Galloway, OH: Daughter contracted disease in July 1997; age 3 months; Kawasaki diagnosis came Day 10 after initially misdiagnosed with meningitis; three IVIG treatments given; during course of disease kidneys became swollen, and anemia required two blood transfusions; aneurysm developed in left coronary artery; after discharge; axillary aneurysms discovered in each armpit; continues on aspirin therapy, other medications for stomach disorders. E-mail to: cjackson99@juno.com
Kevin and Raye Guynn, Mentor, OH: Son, age 4, diagnosed on Day 4 in April 1997; received two IVIG treatments and follow-up so far has shown no heart damage. E-mail to: CH_GUYNN@LGCA.OHIO.GOV
David and Lisa Stewart, Newark, OH: Son, 3 1/2, diagnosed on Day 4; treated with IVIG within 24 hours in December 1997; gradual recovery (wants to be carried, little appetite) improves quickly with ibuprofen. E-mail to: Deanweezy@aol.com
Mark Steele, Springfield, OR: Son, 3 1/2, diagnosed with Kawasaki Disease on Day 5, December 1997; IVIG and aspirin given, examined by echocardiography. E-mail to: markdq@pond.net
Larry and Lauren Smerling, Mechanicsburg, PA: Son, age 5, diagnosed in 1992 after six days of misdiagnosis; after standard treatment and recovery, has shown no cardiac damage. E-mail to: SMRLNG@aol.com
Stacy and George Geraci, Pittsburgh, PA: Son, age 7, had one IVIG treatment; two echocardiograms have shown no cardiac damage. E-mail to: ggman37@aol.com
Charles and Carolyn Carlison, Colonial Heights, VA: Son diagnosed in 1994 at age 2 years, 11 months; recovered after two IVIG treatments; developed 5-6 cm. aneurysm that is being monitored; since the illness he runs nearly continual fevers, treated with Zithromax, Augmentin and Poventil. E-mail to: cjcarlison@usa.net
Art and Anne McKellar, College Station, TX: Son diagnosed at age 3, Day 21; IVIG given on Day 22; slight dilation of left coronary artery; remains on daily aspirin regime. E-mail to: art@txcyber.com
Stacey Solice, Mesquite, TX: Daughter, age 15 months, diagnosed in March 1997 on Day 8 with severe joint pain, high fever and other symptoms, which completely disappeared, with no evident heart damage, two weeks after her IVIG/aspirin treatment; her twin sister has shown no Kawasaki symptoms. E-mail to: SOLICE_STACEY@tandem.com
Louis and Wendy Slayter, Marshall, TX: Daughter, age 8, treated on Day 7 in January 1997; four echocardiograms have shown no heart damage; seek any information on associations between Kawasaki and asthma and allergies. E-mail to: loups@cleaf.com
Sally and Michael Bishop, Logan, UT: Son, age 4, diagnosed and treated on Day 7 in May 1997; after IVIG and aspirin, no cardiac complications found; but 15-month-old sibling exhibited partial presentation of symptoms. E-mail to: bishopmsjs@juno.com
Greg and Dawn Engeman, Alexandria, VA:Daughter, 3 1/2, contracted Kawasaki in 1994; diagnosed on Day 3 and given IVIG on Day 6, followed by aspirin therapy for 60 days; echos have shown no damage. E-mail to: greg.engeman@mail.house.gov
Ann and Bob Unitas, Arlington, VA: Son diagnosed with atypical Kawasaki Syndrome on Day 6 in March 1997, at age 11 weeks; returned in a month for second IVIG treatment when heart problems discovered; aneurysms have nearly regressed, and baby now has an easier disposition than before the illness. E-mail to: annu@erols.com
Melanie and Ed Blackadar, Burke, VA: Son, age 3 1/2, diagnosed March 1997; released after IVIG treatment and awaits further echocardiogram follow-up. E-mail to: MLNBLS@aol.com
Jeana and David Rodenas, Fairfax, VA: Son, age 3, diagnosed July 1997, after streptococcal infection was ruled out, on Day 5; IVIG and aspirin therapy given; echocardiograms have been normal. E-mail to: fishdr@erols.com
Scott and Teresa Blackwell, Hampton, VA: Son diagnosed in April 1997 at age 2 1/2, on Day 3; relapse followed IVIG treatment, received two more doses; suffered joint swelling, anemia and light sensitivity, but echocardiograms have shown no damage. E-mail to: ntegrity@visi.net
Dennis and Tina Call, Mill Creek, WA: Son, nearly 5, contracted Kawasaki in May 1997; diagnosis came on Day 6; after-effects included stomachaches and headaches; no heart damage indicated so far. E-mail to: CookNGrl@aol.com
Terry and John Bolender, Kent, WA: Son diagnosed in February 1994 at age 2, on Day 8 of illness; severe arthritic conditions persisted for three months, anemia for five months; now a healthy child with no lasting cardiac effects. E-mail to: TerryB@SELLEN.com
Tom and Therese Nair, 2816 12th St. SE, Puyallup, WA 98374: Daughter diagnosed in March 1997 on Day 8; misdiagnosis for allergic reaction to antibiotics delayed treatment, but two echocardiograms show no damage.
Beth Emerson, Sun Prairie, WI: Daughter, nearly 4, treated with IVIG and aspirin on Day 3 in December 1997; IVIG repeated due to a "plateau" in progress; experienced fatigue, light sensitivity, eye irritation, joint pain in recovery phase. E-mail to: Bethae@AOL.com
Maureen Khallad, Calgary, Alberta: Son contracted Kawasaki at age 4 in July 1984; suffered no heart damage but now takes medication for high cholesterol levels. E-mail to: khallada@cadvision.com
Marvin and Dee Popil, Calgary, Alberta: Son, age 3, contracted Kawasaki in March 1997; treated with aspirin, IVIG, and awaits results of echocardiogram. E-mail to: mpopil@netway.ab.ca
Fred and Jeanette Wright, Castlegar, British Columbia: Daughter, age 2, diagnosed in May 1997 after initial misdiagnosis in E.R.; after-effects include sun-sensitivity of her eyes, but cardiac follow-up so far is encouraging E-mail to: fjwright@netidea.com
Kristina Martinsen, Richmond, British Columbia: Son became ill at age 7 1/2; developed reaction to IVIG and especially to the repeat dose given a few weeks later (an antihistamine countered the reaction); some minor arterial swelling but has passed a stress test. E-mail to: lunar@direct.ca
Kevin and Rainee Mayo, Victoria, British Columbia: Founders of the Kawasaki Foundation of Canada. Infant son contracted Kawasaki in October 1996; had fluid around the heart, large blood clot in right coronary artery; still afflicted with giant coronary aneurysms. E-mail to: kmayo@bccancer.bc.ca
Christine Bell, Box 433, The Pas, Manitoba, Canada R9A 1K5: Daughter became sick in February 1996 at 2 3/4; Kawasaki diagnosis considered and rejected; misdiagnosed as amoxicillin reaction, and later tested for rheumatoid arthritis (paralysis in fingers and hands over several months); finally diagnosed with Kawasaki diagnosis, with no treatment or heart assessment.
Brian and Margo Dalzell, Dartmouth, Nova Scotia: Son, 5 1/2 months, diagnosed with Kawasaki Syndrome in June 1997, Day 3 of illness; IVIG/ASA given; echocardiograms show no heart damage. E-mail to: Bdalzell@nbnet.nb.ca
Ken and Lisa Adams, Orangeville, Ontario: Son diagnosed October 1997 at 3 1/2, on Day 7; no cardiac problems have been noted. E-mail to: kenster@ora.auracom.com
Don and Colleen Farrar, Sarnia, Ontario: Son diagnosed at 16 months on Day 8, January 1985; suffered left coronary dilatation and, following three IVIG treatments, remained on aspirin therapy for three months; yearly echocardiograms show no apparent damage, but he suffers from headaches and occasional angina. E-mail to: dfarrar@ebtech.net
Martin Firestone, Toronto, Ontario: Daughter, age 3, developed five of six Kawasaki symptoms; following IVIG/ASA treatment, no heart damage discovered. E-mail to: WFirestone@aol.com
Catherine and Bob Depape, Alouette, Quebec: Son contracted Kawasaki at age 3, with no apparent heart damage; however, a repeat echocardiogram a year later showed a growth in his left ventricle that required surgery. E-mail to: bobcat@netrover.com
Chiemi and Jose Luis Romero-Hicks, Guanajuato, Mexico: Daughter diagnosed at 19 months in June 1997 on Day 8 of illness; IVIG/aspirin treatment received, and echocardiogram has shown no heart damage. E-mail to: jlrh@quijote.ugto.mx and mpeyro@quijote.ugto.mx
Susan Koay and Chris Baring-Gould, Box Hill, Victoria: Infant son suffered coronary artery dilations that regressed by age 7 months. E-mail to: smkoay@ozemail.com.au
Bret and Susan Sherrington, Brisbane: Infant daughter was diagnosed late, at age 4 months, which resulted in initial heart failure and aneurysms that have regressed. However, blood clots formed in her limbs, leading to the amputation of her right arm below the elbow. They have posted more details at their web site. Or, e-mail to: bretsue@bit.net.au
Bill and Robyn Salt, Mt. Maunganui: Daughter had Kawasaki at age 2 in 1984; no cardiac problems have been detected. E-mail to: bayair@enternet.co.nz
Robert Raymundo, Pasig City, Metro Manila: Daughter diagnosed with Kawasaki in October 1997; received ASA therapy. E-mail to: popephil@webquest.com
Javier Suarez: Son diagnosed at 23 months in October 1995; received IVIG treatment and aspirin therapy for two months, with no heart damage; in September 1997 he developed mild sensorineuronal hearing loss. E-mail to: fribera@abaforum.es
Philip and Cathryn Martin, near Atherstone, England: Daughter contracted Kawasaki at age 4 in February 1997; received IVIG treatment and has no heart damage, although she has developed asthma. E-mail to: lanz@globalnet.co.uk
Sue Davidson, Coventry, England: Coordinator of the British group Kawasaki Syndrome Support Group; son developed aneurysms and suffers from occasional angina. Write: 13 Norwood Grove, Potters Green, Coventry CV2 2FR U.K.
Dave and Deirdre Sadgrove, Lancashire, England: Son diagnosed with German measles, scarlet fever and rheumatic fever before arriving at Kawasaki diagnosis after two weeks, in June 1996; six months later he suffered petit mal fits but now is well with no aneurysms. E-mail to: Dave.Sadgrove@btinternet.com
Brian and Janet Smith, Stockport, England: Son diagnosed November 1996; treated with IVIG and aspirin, and echocardiograms show no damage. E-mail to: Brianss@classic.msn.com
Paul and Jennifer Carpenter, Haslemere, Surrey, England: Son diagnosed February 1997, after misdiagnosis; treated with IVIG and aspirin; no aneurysms, but frequently suffers from tiredness, severe joint pain and bad temper.E-mail to: paul-carpenter@lineone.net
Yvonne Dougan, Edinburgh, Scotland: Scottish co-coordinator of the British support group; son developed Kawasaki at age 5 1/2 and has two aneurysms; continues on aspirin therapy and annual check-ups. E-mail to: y.dougan@stevenson.ac.uk
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