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40 years post KD

Posted: Thu Mar 08, 2018 5:23 pm
by Jim_Carlson
My name is Jim Carlson. When I was 4 years old I contracted KD. That was 1976. No one knew what I had and at that time and there were only a handful of confirmed cases of KD within the continental U.S. I almost died. I have very few memories of that time but I suspect KD has haunted me my entire life.

I was always sick as a child. Like many others on this forum my skin pealed and I was constantly sick, and in and out of hospitals for a few years following my KD diagnosis. I was an extremely skinny kid even though I was very active in sports. I played virtually every sport under the sun, even though I was never very good at any of them. I ate healthy and had caring dutiful parents that provided me every opportunity. It is safe to say that, compared to my peers, I was behind the curve at virtually every activity in my youth. I cannot say for certain but I suspect part of these problems were the result of KD.

I have struggled academically. I was a terrible student when I was a child. I had to work so much harder at school to keep up with the other kids. I have not heard other KD survivors mention ADD type symptoms and I am curious if I am alone in this regard. It is possible that these problems have nothing to do with KD but I strongly suspect it did. My parents say they noticed a physical transformation in me from before KD to after KD. Before I was a larger child and after KD I was a skinny child of average height. I am much shorter than most of my cousins and siblings. I am 5'11" and 175 lbs., and most of my other siblings are 6'1" to 6'5" and 200-250 lbs. I never developed upper body muscles even though I exercise and stay in fairly decent shape.

I have mild arthritis and this has been a problem my entire life. I thought it would get worse as I aged but surprisingly it has not. I suspect it has not gotten worse, in part, because I stay active and in good health.

I had an ultrasound completed of my heart at 40 years old to see if there was any sign of damage. Everything looked normal but I would like advice on the best preventive medical screening KD patients should receive. I have a young daughter and I need to stay healthy for her. I do not believe I have any heart damage but I like to do lots of backcountry skiing and mountaineering and I always worry that intense exercise could be unwise for someone who had KD.

In closing, my ADD symptoms have been the most debilitating. I completed a BS in biology and a MS in ecology but I have had to work so much harder than my peers to achieve modest professional success. So often I have wanted to give up, crawl down a hole and never come out. Has any other parents or patients noticed ADD symptoms following KD and if so, do any of you have interventions that have helped you cope with the lingering effects.

Sincerely,

Jim Carlson

Re: 40 years post KD

Posted: Sun Mar 25, 2018 3:35 am
by sumikhan
Hello everyone,

My sister was diagnosed with KD when she was 1.5 years old and now she is 22 years old. everything was fine. my dad forced her to go through routine heart checkup out of the blue and now doctors doubt for coronary anuerysm of size 8mm. we are very stressed actually Im shocked. the doctors always used to assure us that she will live a normal life. We will be getting a CT angiogram done on this Thursday, Has anyone encountered similar situation?

Re: 40 years post KD

Posted: Thu Mar 29, 2018 10:31 am
by Sarno98
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

Re: 40 years post KD

Posted: Tue May 29, 2018 4:09 am
by blatina1516
My Grandson James was just diagnosed this morning for KAWASAKI Disease.it's like a nightmare to us. We was born premature 5 1/2 last December 2016.We have no idea where to start, what to do, so many questions in our minds, is he dying...Pls god no....What we need is your help guys, your moral support, your piece of advice.

Bernadette Latina
From Las Pinas City
Philippines
00 63920 1208252
00 639166470698

Re: 40 years post KD

Posted: Tue May 29, 2018 7:44 am
by Sarno98
Good Day,
I will pray for your little one. I hope this reply I received from KCLP gives you some answers. I found it very helpful.
Best Regards & well wishes
Sarno98


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