My Story - KD in 1989

Personal stories of individuals and families affected by Kawasaki disease
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akkdsurvior
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Joined: Sat Mar 12, 2016 2:17 pm

My Story - KD in 1989

Post by akkdsurvior » Sat Mar 12, 2016 2:27 pm

Hello everyone my name is Amy and I am a KD Survivor! I had Kawasaki in 1989 when I was 5 years old. The Dr. in Florida told my mother I was lucky to be alive because I was the second case she was aware of, They found it in the 4th stage because they kept telling my mother I had the Flu. I had heart check ups for a few years after and everything seemed to be ok. Well lets fast-forward to now I experience some things that seem rather odd The drs can never seem to figure it out and I somehow wonder if my symptoms in Adulthood are somehow linked to long-term effects. For the past week I have been having pressure in my chest that is where my research on Kawasaki really started (I have looked into it before but never this much) My Lymph nodes stay swollen all of the time which the Dr. can never figure out why, I have skin that peels from my fingers every so often for no reason (No dry skin), My throat still swells at times (this is why I had to have my lapband removed) and I develop a lot of scar tissue and inflammation. Now of course these things may not be linked but hey I haven't found enough information on Adults who have had it to tell me otherwise. I think this is def. something I will be addressing and having checked out! On top of this my Son was also diagnosed with Scarlet Fever when he was 5! I wonder if it really was Scarlet Fever (He complains of chest pains) and I wonder if it really can be passed down. I have a lot of thoughts running through my Brain.

Nancy
KD Forum Leader
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Joined: Mon Apr 25, 2005 6:49 am

Re: My Story - KD in 1989

Post by Nancy » Mon Mar 14, 2016 2:11 pm

hi

KD cannot be "passed down", but there is a slightly higher risk of developing KD in a child whose parent has a history of KD, which
suggests a genetic predisposition to developing KD.

For yourself, you might be interested in this study:

Kawasaki Disease Research Study
The Kawasaki Disease Research Center is currently conducting a research study to better define the long-term cardiovascular outcomes of KD patients. The research study involves filling out a questionnaire about your health-related history. You will also be invited to complete a short follow-up health questionnaire every few years.
If you are an adult or young adult with a childhood history of KD and are interested in learning more about the study, please take a moment to read the flyer on the main page, or feel free to contact us directly at adultkd@ucsd.edu.

Also, here is a link to an article for adults who had KD as children. Dr Jay Gordon is well known for his interest in adults with a history of KD. His wife is the KD researcher, Dr Jane Burns.

http://www.medscape.com/viewarticle/712188

best,
Nancy

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