Diagnosing and Treating Kawasaki Disease: A Patient’s Journey

IG Living's patient advocate, Abbie Cornett, hosts Nick Burrus, a Kawasaki disease patient, to discuss his journey with the disease that due to a delayed diagnosis led to complications and the need for a heart transplant.

Transcript

Hello and thank you for joining us today. My name is Abbie Cornett, and I am the patient advocate for IG Living magazine. This podcast is brought to you by IG Living magazine to give readers an opportunity to hear from healthcare experts on topics important to them. 

In this episode, we will be discussing the critical importance of early diagnosis for patients with Kawasaki disease and how intravenous immune globulin plays a vital role in treatment. I'm excited to have the pleasure of speaking with Nick Burrus today. Nick is a Kawasaki patient who, due to a delayed diagnosis, had serious complications that led to him needing a heart transplant. He is here today to explain his journey with his disease.

Abbie: Nick, thank you for being here today.

Nick: Yeah, absolutely. Thank you for having me.

Abbie: First of all, could you tell us a little bit about yourself and your diagnosis, and how that came about? 

Nick: I grew up here in California. I had somewhat of a weak heart from birth. And I got something called Kawasaki disease at a time it was a hard-to-diagnose disease because it only exists in a subset of the population, and medical training was not very good at the time for this disease. It happened to be discovered when a visiting doctor not a part of a hospital, as I was going to multiple hospitals, happened to recognize the disease when he was walking across my ER room. This is a very rare disease.

Abbie: That’s fascinating. Why do you think the hospital wasn’t looking for that disease?

Nick: So when I first got the disease, it was about 30 years ago, and back then, there was a lot less training on childhood diseases for ER doctors. And, because the disease was believed to only exist in Korean or Japanese descendant children at the time, they didn't think this disease would have been correlated with other populations. Medical schools also taught about skin conditions that are common with certain races, so it often gets skipped over other types of skin rashes, etc. So the only thing they could think of was a bug bite. This was not a disease that medical providers were trained on at the time.

Abbie: So what effects did that delayed diagnosis have on you and your health?

Nick: So Kawasaki disease basically inflames the arteries and your entire vascular system. The inflammation causes your skin to peel off like a red strawberry. You get a red tongue and your nails will start getting like bright red, and you just get like really sick with a high fever of 104 to 105 degrees. So with this, it causes a lot of damage to your cardiovascular system. It causes aneurism, and it causes calcium buildup. Calcium is not always the best thing to have for the heart. If you have too much calcium, it slows the heart down. And with this disease, there is a treatment for it, but they have to treat it within a certain amount of time or it causes permanent damage. 

Abbie: So, I'm assuming from that you had permanent damage, and what was that permanent damage?

Nick: They believe it weakened my heart severely because of the possible aneurisms that damaged the cardiovascular system. And calcium deposits cause a lot of scar tissue to grow, which your body tries to heal. That, in effect, can make your vascular system or your heart even weaker or can cause blockages.

Abbie: So what did that mean for you? What did that lead to?

Nick: It led to an extremely weakened heart. So my heart had an ejection fraction of less than 30 percent because Kawasaki disease caused so much damage to the vascular system. I was always in some sort of chest pain. I was always short of breath. That was my entire life. A normal human could expect an ejection fraction about 60 to 70%. It’s normal when you're in your 20s and 30s for it to be a little above 70. When you get into your 50