Untreated Kawasaki Disease/Adult Health Related Complications

General discussion regarding Kawasaki disease
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Sarno98
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Untreated Kawasaki Disease/Adult Health Related Complications

Post by Sarno98 » Thu Apr 05, 2018 4:36 pm

Good Day,

I am new to this forum and thought I would just put this out there to see if anyone could help me figure out what has baffled the doctors I’ve seen. I am a petite 56 year young, very fit and active women. I have always eaten a very healthy diet. I was a very sickly child/young adult with many bouts of streptococcus, tonsillitis, pneumonia, hypoglycemia, mono and scarlet fever.
Always treated with rounds of antibiotics.

My sister pointed me to the KD forum with the thought that I may of had a undiagnosed case of KD. She has a child with a confirmed diagnosis of KD. He was treated and is a healthy 24 year old.

I’ve been suffering from arthritis throughout my body since i was a teenager. My rheumatologist has run many test over the years. These test have confirmed that I have some sort of autoimmune problem. I believe my activities and anti inflammatories are keeping me from locking up completely.

My heart is now causing me issues. Since I was in my early 20s I’ve had spells of fainting. This has started to become more frequent and I’ve black out ended up in the hospital recently. My blood pressure is all over from extremely low to high.

A minor procedure for Carpal Tunnel on both my wrists sent me in for an EKG. The EKG showed that I have low voltage and sinus bradycardia. After that I had a heart ultra sound that showed I have a slight murmur and some regurgitation. I am now on a 30 day Mobil cardiac monitor to track my heart during regular activity. (Not very comfortable for an active person)

So I guess I’m looking for some information to present to my Doctors that may help them. I feel that they will think I’m crazy if I bring up the fact that I believe I could of had KD as a child. Looking at all the symptoms of KD I did have all the signs except for a few. 1. I’m a girl 2. I don’t remember if I had red eyes 3. I was around 6 or 7 years old 4. I’m not Asian.

Any thoughts would be appreciated and Thank you in advance for your time if you choose to reply.

Best Regards to the KD Community
Susan

Nancy
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Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by Nancy » Thu Apr 05, 2018 9:05 pm

hi

good luck to you in your search for answers !

However, Kawasaki Disease is not an autoimmune disease. It is an acute illness that begins and ends with or
without treatment.

best,
Nancy

Sarno98
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Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by Sarno98 » Fri Apr 06, 2018 8:20 am

Nancy,

Thank you for your reply. I however have found your reply to be confusing.
I have done a bit of research and talked to confirmed KD patients (Treated & Untreated) as well as an adult KD test study patient outside of this forum. I have found that KD is strongly thought to be an autoimmune disease and one symptom is joint pain/arthritis and long term heart problems. I am not a doctor but can so many cases be wrong? I know there are so many unknowns with this disease and I’m hoping to get some more input from adult confirmed KD (treated & untreated) cases that are having similar health problems. I feel the information in regards to symptoms, tests, & treatments, from this forum, will help me find a direction towards a diagnosis.

Once again thank you in advance for taking the time to read and reply to this post.

Best Regards,
Susan

Nancy
KD Forum Leader
Posts: 668
Joined: Mon Apr 25, 2005 6:49 am

Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by Nancy » Fri Apr 06, 2018 11:36 am

hi

Sorry if my reply was confusing. The Kawasaki Disease Foundation, kdfoundation.org, is very clear that
Kawasaki Disease is not an autoimmune disease.

best,
Nancy

empoweredparent
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Joined: Sun Oct 31, 2010 12:13 pm

Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by empoweredparent » Sat Apr 07, 2018 8:08 pm

It's not a autoimmune disease but kids with KD tend to have immune systems that are tweeky per a Stanford rhuemtolgoist. Nancy Jane Burns would say the same things and remember the original trigger of KD is an immune system reaction. My daughter was a little more sensitive to vaccines and tended to be more feverish that my son. I likely had KD as a kid too and was worse than her. Check out connective tissue disorders which can cause joint pain and are very common like ehlers danlos.

Sarno98
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Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by Sarno98 » Sun Apr 08, 2018 9:16 am

Empowered parent, Thank you for your reply.
I have also have found that some KD cases do end up with a comprised immune system. I never stated that I thought KD was an Autoimmune disease, but I do have my suspicions that there is some connection. You stated that you may of had KD as a child and you have 2 children that have had KD. Can you tell me how your health is as an adult? Do you remember any illness as a child that may of been KD? Have you been told that KD can run in the family? I hope that your children are doing well and once again thank you for your reply.
Best Regards,
Susan

KCLP
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Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by KCLP » Sun Apr 08, 2018 2:17 pm

Susan,

The cause of Kawasaki Disease is unknown.

Kawasaki Disease is a complex disorder that effects the genetically susceptible.

There are several different hypothesis in the etiology of Kawasaki Disease including but not limited to:

Infectious Disease:
The body's exaggerated inflammatory response to an environmental or infectious trigger combined with genetic factors. No specific agent or
infection has been identified and the role of genetics is not fully understood.
*rarediseases.info.nih.gov/diseases/6816/Kawasaki-disease

Autoimmune Disease:
A disorder where the body's immune system attacks it's own tissues as if it were a pathogen or organism that causes disease.
Scientists believe an infection may play a role in triggering an autoimmune response.
There are more than 80 identified Autoimmune Diseases.
The Arthritis Foundation suspects Autoimmune Disease to play a role in Kawasaki Disease although, not proven.
*www.arthritis.org/about-arthritis/types ... ki-disease
*en.Wikipedia/wiki/Kawasaki_disease

Auto Inflammatory Disease:
Innate Immune Disorder; When part of the body's immune system is missing or does not function properly.
Virus, injury, or pathogen's can trigger the innate immune system.
Inflammation can occur anywhere in the body. Fever is the most common symptom. Muscles, joints, skin, the gastrointestinal system, and
organs can be effected.
Auto inflammatory Disease is rare. The most common being PFAPA.
Some diseases that were once thought to be autoimmune are now being considered as auto inflammatory. Including; atopic dermatitis, psoriasis,
chronic arthritis, and lyme disease.
*onlinelibrary.wiley.com/doi/full/10.1111/cei.12832

Keeping an open mind and engaging in open discussion about the cause/treatment/long-term management of Kawasaki Disease until scientific research provides conclusive evidence, unlocking the mysteries of Kawasaki Disease is a necessity.


Guidelines emphasize that Kawasaki Disease requires follow-up with cardiac stress testing and non-evasive echocardiography.

Due to differences in disease mechanisms, coronary disease associated with Kawasaki Disease should be managed differently than atherosclerotic coronary disease.
*heart.bmj.com/content/103/22/1760

Choosing a Cardiologist when suspecting a history of diagnosed or undiagnosed Kawasaki Disease as an adult is important.
Most adult Cardiologists are unfamiliar with the specifics and pathology of Kawasaki Disease.

I would suggest searching for an Adult Cardiologist in your area that specializes in Kawasaki Disease for treatment.

Dr. Jane Burns @ Rady Children's Hospital/San Diego, Ca. currently has an active clinical trial to learn more about the care of adults who suffered from Kawasaki Disease. Her team can be contacted at: adultkd@ucsd.edu.

Also, the same team as mentioned above is conducting a KD genetic study for families who are genetically predisposed to developing Kawasaki Disease. The contact information is: kdgenetics@ucsd.edu.

Dr. John B. Gordon at San Diego Cardiac Center specializes in the management of Kawasaki Disease in adults.

There are several members, active on this forum who have concerns about their adult health and suspect Kawasaki Disease as the culprit. You are not alone. I hope you find the KD stories and general discussions a valuable resource while researching the causes of your health mysteries.

KCLP

Sarno98
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Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by Sarno98 » Sun Apr 08, 2018 3:46 pm

KCLP,

Thank you for your reply.
I have found much of your information helpful. I will continue educating myself on KD symptoms, treatments, case studies and long term effects. You have given me a great start. I appreciate you taking the time to send me your findings and sites to check out. I am also going to pass on this information to my Cardiologist and Rheumatologist.

Best Regards,
Susan

Cici
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Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by Cici » Mon Apr 09, 2018 12:41 pm

KCLP,

Thanks so much for sharing your insights. It’s the best reply I’ve read so far.

“Keeping an open mind and engaging in open discussion about the cause/treatment/long-term management of Kawasaki Disease until scientific research provides conclusive evidence, unlocking the mysteries of Kawasaki Disease is a necessity.”

All the best,
Cici

Forint
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Re: Untreated Kawasaki Disease/Adult Health Related Complications

Post by Forint » Thu Apr 12, 2018 10:23 am

as Cici, wanted to say lots of thanks for sharing your insights! i've also found it super thankful! would appreciate anyone else coming with any updates if they have any! thanks again!

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