Von Willebrand's Disease

Here's that story I did last week on the blood disorder Von Willebrand's Disease. I finally got it up on You Tube.

-NewsAnchorMom Jen

Methodist Medical Center's new online healthcare program, MyMethodist eHealth, is a proud sponsor of this blog post. MyMethodist eHealth is the secure link to your doctor's office that lets you request appointments, order prescription refills, update your personal health record, and more. Sign up for MyMethodist eHealth here

Does your child have a lot of nose bleeds?

I got this question from a NewsAnchorMom.com reader and the story that we did on the topic turned out to be very interesting.

Hi Jen,

I am the proud mom of a great 5 year old boy named Chase. For the last couple of years he has suffered nose bleeds. 98% of the time are when he sleeps. Sometimes he has failed to wake up and is gagging and choking in his sleep. He bleeds for more than 10 minutes. Sometimes up to 45 minutes to an hour. After many painful packing of the nose and countless doctors visits we have found a part of the cause. My son suffers from Von Willebrands Disease.

There are many kids with the same ailment but often go diagnosed. Von Willebrands is a factor in the blood we all have. It helps in the clotting of his blood. However, Chase lacks this factor. There are three levels and he has the level one. Which is the lowest and least worrisome to have. It took many needle pokes and test to determine this.

However, with so few bleeding disorder clinics we didn't know where to go. Until October of last year....we learned that Peoria had its own Bleeding Disorder Clinic. The other nearest are St. Louis and Boston. Dr. Tarantino is Chase's physician and he is right here in Central Illinois. Also rated one of the top specialists in the country. How lucky are we? It is still a learning process and the medication doesn't always have the greatest side effects but at least it is a step in the right direction.

There are more people out there with this than is known. Often it is hereditary possibly coming from a mom who has had what has been diagnosed or misdiagnosed has endometriosis or heavy menstrual cycles. I know that I have been thru 8 surgeries to treat endometriosis and was ready to undergo a hysterectomy to try and "fix" this problem. After being tested and knowing how to treat it, I don't have to have surgery...well at least not yet. Here is the link to Von Willebrands Disease. Here's the National Heart Lung and Blood Institute.

Here's the story that aired on WHOI:

Do your kids have nose bleeds that don't go away within a few minutes? Does your menstrual cycle last seven days or longer?
You could be one of the hundreds of people in the Heart of Illinois who has a bleeding disorder and doesn't know it.

Five-year-old Chase Murgo is doing what he loves most, playing baseball. It's one of the few sports he can play. Chase has a bleeding disorder called Von Willebrand's Disease. Renee Murgo said, "You would bump him and your elbow would hit him. He would be fine that day, but that night he would have a nose bleed because of the bump to the head." That's why Chase has to avoid all contact sports. What seems like a minor injury for him can be a scary nose bleed. “He would cover a pillow case, a full beach towel. They were white to begin with and then they were completely covered,” said Renee.

Dr. Michael Tarantino is one of the nation's leading hematologists. He runs the Comprehensive Bleeding Disorder Clinic in Peoria. Dr. Tarantino said,"I think in truth we're really still in the process of understanding Von Willebrand’s disease. "

We talked to him about the risk factors for a bleeding disorder:
1. Nose bleeds that lasts more than a few minutes
2. Gums that bleed when you brush your teeth
Dr. Tarantino said, "If your teeth or gums are healthy, they really shouldn't bleed when you brush them.”
3. A family history of bleeding disorders
4. Women with heavy menstrual cycles
Dr. Tarantino said, "It really shouldn't last for more than 7 days and the amount of time a woman should tend to the bleeding, it shouldn't be more than every couple of hours.
5. Women who become anemic during menstruation

Dr. Tarantino estimates there are around 3000 people in the Heart of Illinois with Von Willebrand's Disease like Chase. If those people are in an accident, have surgery or have a tooth pulled.. it could lead to passing out, infection, or even death. Dr. Tarantino said, "If the hematoma is big enough, it can cause the person to become anemic, that can lead to pressure on the heart. so it can be very serious."

Chase's mom has a slight case of Von Willebrand’s, Chase's is more serious. Renee’s mom said, "In the beginning he was terrified. he would kick and scream. It would take 7 of us to hold him down to draw blood." But chase is handling the disease like a pro. He now carries his $700 medical nasal spray with him in a cooler in case of an injury. It's something other people don't have to do, but just knowing he's protected is a relief.
Renee said,"He's gonna have this for the rest of his life. And we'll just educate. He'll know what to do. He'll lead a completely normal life."

The little baseball fan already has a goal in life: to play baseball on T.V. That dream came true when this story aired. Chase will continue his baseball dreams. When he turns six this August, he will be throwing the first pitch at the chief's game.

I will post the video for this story when I get back to work on Monday!

-NewsAnchorMom Jen

Methodist Medical Center's new online healthcare program, MyMethodist eHealth, is a proud sponsor of this blog post. MyMethodist eHealth is the secure link to your doctor's office that lets you request appointments, order prescription refills, update your personal health record, and more. Sign up for MyMethodist eHealth here.