hair loss?

General discussion regarding Kawasaki disease
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hair loss?

Post by Livin4Jesus » Sat Jul 07, 2007 2:13 pm

hello, i am a few weeks shy of 17, female, and 7+ weeks post KD.

i personally am lossing massive amounts of hair. i told my Dr. and he said that was normal for people who just suffered from life-threatening illnesses. the hair comes out easily when pulled but it is not coming out in patches.

thankfully i started with thick hair, so as of right now, it is hard for people to tell, but i estimate that i've lost around 50% of my hair.

i just wanted to know if anyone had ever had this happen before, and if/when it stopped.


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Re: hair loss?

Post by Momcat » Sun Jul 08, 2007 1:04 am

Thanks for posting.
My daughter is only 10 years oild, but has a spot on her scalp that is about 1 inch wide by about 3 inches long that does not have hair anymore. This happened after KD and we think it is a direct result of the KD. We only see it when she has her hair up in a ponytail. Other than that, we didn't have any other problems with hair loss, even when she was on chemo drugs. Not sure if this helps with your question though.
Wow, you are 17? I thank you for posting, we can learn a lot from older people who had KD!! I imagine you system has been through an enormous shock with KD and perhaps your hair loss is associated with that. I bet you are back to normal hair growth before long. Please let us know if you have any other symtpoms that are bothering you. All information we can glean from older kids or adults that had/have KD is very important for us!!
Last edited by Momcat on Sun Jul 08, 2007 8:55 pm, edited 1 time in total.

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Re: hair loss?

Post by Ellen » Sun Jul 08, 2007 7:11 pm

When I was a little girl (58 now) my grandmother had scarlet fever and she lost a lot of hair. I remember it was thin after that. I was told it was the high fever but since there may be some connection between strept, scarlet fever ( mis diagnosed ) and KD perhaps it is also a reaction to the bacterial toxins that may be the cause of KD.
My daughter lost hair from a bad perm when she was 16. It stayed thin for quite a while then a beautician suggested a shampoo for damaged hair made by Nioxin. It is expensive as far as shampoos go but it lasts a long time and it has really worked for her.
My son thined his hair out when he was 18 by falling asleep with hair dye on. It was "in vogue" to have bleach blonde hair at the time. The thing is that all these people are doing well with the hair they do have, they have friends, jobs, families. All in all not so bad.

PS: My grandson had KD this winter and that is how I learned so much about it. Mostly from this forum. Keep in touch.

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Re: hair loss?

Post by braysmom » Fri Jul 13, 2007 10:36 pm

my daughter has kd. and i have notice some hair loss. more like hair breaking in spots.
i ask the dr he said she was blonde and they (blondes) will do that? i have never heard anything
like that before but i have also notice her nails doesn't grow very fast since she's had kd
has anyone else notice the nails?


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Re: hair loss?

Post by dkrende » Thu Apr 19, 2012 8:24 am

My 18 year old son got KD in January and then it reoccurred a few weeks ago (mid April). He was treated the second time with IVIG and responded right away. He is losing lots of hair though. He started off with a lot so you can't tell to look at him but you can tell if you run your fingers through his hair. Plus, there's tons of hair in the sink after he brushes. Sounds like, from the replies here, this is not uncommon. Hopefully it will stop soon and grow back.

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Re: hair loss?

Post by Belair » Wed Apr 25, 2012 9:19 pm

My 4 year old daughter was in the hospital for 9 days at the end of Feb with 2 rounds of IVIG and 3 days of steroids, then a month later (end of March) was admitted again and was given steroids and Remicade. She has aneurysms and constant stomachaches, but today, clumps of hair have started to come out! *cries* What, if anything, can I do?

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Re: hair loss?

Post by jteath » Wed Apr 25, 2012 9:42 pm

I'm amazed at the older ages being treated for KD. My son was seven when diagnosed and had he not had all the systems the Dr said they would have felt it was something else due to his age... We haven't had much trouble with the hair .
Hopefully your symptoms will go away. Its so nice to have this site to talk to people and know we are not alone...
Keep us posted.

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Re: hair loss?

Post by Deniz Yeter » Fri Jun 08, 2012 12:13 am

Alopecia (hair loss) may be seen in Kawasaki syndrome, but there have only been a few reports in the literature and it does not seem to be recognized as a symptom:

Infantile acrodynia (mercury hypersensitivity) is a differential diagnosis for Kawasaki syndrome, and alopecia is a characteristic sign of acrodynia. Perhaps there is a history of exposure to mercury preceding the development of your Kawasaki syndrome? (i.e. methylmercury from fish consumption, placement of dental amalgam fillings, thimerosal in vaccines, mercury vapor from a broken thermometer, etc)

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Re: hair loss?

Post by mayala » Mon Jun 11, 2012 2:04 pm

Hey my friends daughter has KD an has seen some hair loss but you should refer to a doctor to check on this.
If you are looking to treat hair loss without medications then read hairmax reviews, hope this helps.

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Re: hair loss?

Post by Fourfillies » Fri Oct 06, 2017 7:29 pm

My 12 year old daughter was diagnosed with Kawasaki's this past July. She responded well to first round of IVIG and has no aneurysms, thankfully. Starting in September she began to experience hair loss, I would say it is now at about 50%. Echoing some other posters, it doesn't seem to be an official symptom of Kawasaki's but maybe just a reaction to the extreme stress the body has endured. I hope it grows back as she is self conscious about it!

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Re: hair loss?

Post by TriciaElMaraki » Sat Oct 07, 2017 5:34 am

My 7year old son recently passed away from KD ... we sadly were not fully aware of its fatal dangers.
My son was losing hair ... we never thought it could be his Kawasaki coming back. Plz do spread the word so that others do not pain as we r now with the loss of our son ...

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