Hi my daughter is 21 had KD age 2 was in hospital for 5 days on asprin for 6...

Hi my daughter is 21 had KD age 2 was in hospital for 5 days on asprin for 6 months after 3 clear heart scans I have taken her to A and E a few times with pains in her chest and sometimes she passes out for no reason her egg and heart trace are always normal but so are mine and I'm waiting for open heart surgery to replace a valve and they said I've had rheumatic fever as a child is KD a new name for rheumatic fever? I really do think she needs her heart checking does anyone else suffer with this problem? She is tired all the time no energy and is on B12 injections

  • Hi Kim,

    Yes, I had the same symptoms as your daughter's that started about 20 years after having KD (I had KD when I was 5)

    After a lot of testing I was diagnosed with coronary microvascular disease. Studies done in Japan have shown a link between the 2 conditions.

    Here is info about coronary microvascular disease.

    https://www.nhlbi.nih.gov/heal th/health-topics/topics/cmd/si gns

    Good luck to you and your daughter!

  • Wow thank you very interesting I'm going to have a word with my doctor they keep saying there's nothing wrong with her and now I have been diagnosed at 49 needing a new mitral valve because they think me myself have had rheumatic as a child it just seems funny she had KD which can affect the heart and she's passing out and chest pains really makes me wonder I do need to push this now because it's not normal for a 21 year old thank you so much Molly that's been a great hell

  • Hi I'm 26yrs old and had KD, I was 10 weeks old when I was finally diagnosed and since I was in primary school I have suffered with sharp stabbing type pains in my chest and they have no cause for it at all except what could be after effects of KD I can't breath properly when I get them because of the sharp pain. I did have monitors but they all came up clear I still suffer with it all now and still have no idea why. X

  • Glad to help. Unfortunately you have to really press for doctors to keep looking. So few know much about post- KD issues and even fewer bother to follow the newest research findings. Even after I took the studies my primary care physician gave me about it my cardiologist brushed it off telling me that microvascular disease is "extremely rare especially in people your age." I said you mean "rare like Kawasaki Disease?" Then he agreed to run more tests. Don't give up!

  • Wow that's the same as Ellie she said they are stabbing pains and sometimes she faints but they say it's nothing

  • I won't give up if I find anything else out which may help someone else I will post on here thank you for your response

  • I believe rheumatic fever comes from untreated strep. However, KD and strep often go together. And parents who had KD often have children who get KD. Hope you get your answers. :\

  • I have fainted a few times with mine especially when I've been in work I was even taken to the hospital once as it was so bad from work I had an X-ray and an ecg everything came up clear they scare me sometimes because of how bad they get. When I was diagnosed I was one symptom away from it being fatal it was only because a doctor from London got curious about my case I was the first alderhay had ever seen. I hope she find outs what's causing them soon because I've had these for well over 10 years and am still no closer to finding out what it is xx

  • So do you think rheumatic fever and KD are the same? It just seems funny I'm 49 got diagnosed in 2010 with mitral valve disease which they said as stem from me having rheumatic fever as a child but my mum said I've never had it so it's a bit confusing

  • I don't blame you plus they don't know how KD truly effects us as adults after having it as children they are still learning so much about it so make sure you pester as much as you can I'm at the doctors atleast 3 times a year because of how bad they get and I just get sent for ECGs when I mention KD they just by pass it because they don't understand it. Doctors can't half be arseholes because it's easier to push it off as nothing they even tried to tell me it was muscle strain...:how can that effect me for this long and only ever be in the left side of my chest they don't listen xx

  • I will find out as much as I can it's not nice seeing your daughter passing out all the time and pains in her chest and no one knows why well they need to get their finger out of their arses and start doing something about it they look at me like I'm the crazy one lol I would of loved to have been a doctor so I do study a lot and I'm far from stupid and another thing now if they don't no what it is well you have fibromyalgia crazy people xxx

  • My son passes out and cries about heart pain but he's 5 so they ignore him. His heart returned to normal a year after kd.

  • My son is 18 he had it when he was 3 the dr saud it was growing pains he wore a monitor last year for 3 days nothing showed up seem like when yoy get older they dont seem to care

  • Totally agree it's ridiculous I just get fobbed off because nothing shows up on monitors

  • Awww I hope he's keeping ok now KD I think leaves a lot of side effects reading between the lines on here xx

  • You guys look up dysautonomia and POTS http://www.dysautonomiainterna tional.org/page.php?ID=30

  • Hello, im 22 and had KD at one years old and for the past four years I have had the same type of stabbing pains in my chest, been for all sorts of tests and X-rays and they still say I'm fine, they have tried to put it down to when I excercise I pull a muscle in my chest but I'm unsure. I can't believe that there are so many of us with the same situation!