Julian Adams, a 5 Year Old, Tells His Blood Clot Story

Categories: Blog,News,Patient Stories

The personal story below is intended for informational purposes only. The National Blood Clot Alliance (NBCA) holds the rights to all content that appears on its website. The use by another organization or online group of any content on NBCA’s website, including patient stories that appear here, does not imply that NBCA is connected to these other organizations or groups or condones or endorses their work. Please contact info@stoptheclot.org with questions about this matter.

I want to share OLYMPUS DIGITAL CAMERAmy story. My mom helped me write this:

My name is Julian Adams, I’m 5 years old. I live in Belgium.

When I was (exactly) 1 year old, I developed a blood clot in my leg, as a result of the chicken pox.

I was very sick and I was on life supports. I was in the hospital for a month. The doctors didn’t know how to treat me because the heparin and warfarin were not working at all!  They even tripled my medication to the normal adult dose but the heparin and warfarin still didn’t work to break up my blood clot.

Later, the doctors found out I had a genetic blood disorder called Proteïn S deficiency.  My grandmother has it. My dad, and my sister have it too. They were all tested after I had my blood clot, but I was the least fortunate.  In combination with the chicken pox, it made my blood react, causing this blot clot in my upper leg.  My outer vein-network has taken over but we wonder how long it can hold that kind of pressure and what are the options if it doesn’t?

If somebody has been through the same or if there ‘s a doctor out there who operated already on a small child like myself, please let me know!


Take Home Messages

  • Blood Clots don’t discriminate. Even babies get blood clot.
  • Other illnesses can increase your risk of blood clots if you have a genetic clotting disorder.
  • Most people who have genetic clotting disorders don’t find out about them until they have a blood clot or a family member has a clot.
  • If a family member has a genetic clotting disorder, you may want to consider getting tested to see if you have one too.
Author: admin

One Response to "Julian Adams, a 5 Year Old, Tells His Blood Clot Story"

  1. Barbara Kiss
    Barbara Kiss Posted on May 7, 2014 at 12:25 pm

    Dear Julian,and mum,

    my oldast daughter(20) lives in Belgium, she had a DVT and PE. She sent me your story. We made tests of her 3 sister and bother (15, 4, 2) and all of them had a disorder: very low protein S and Protein C , and a mthfrc677t heterozygot..
    We live in Hungary. Here we saw some specialists, and asked for a treatment or any idea how to avoid DVT.All of them said, just wait. After the first DVT they will get bloodthinner. (but why: it didn’t work at my oldest daughter too)
    I dont really agree with them, my youngest daughter is only 2 so she can!t explain if she has a pain in her leg.

    Do you know about any nem therapy ,vitamins ,food supplements or blood treatment that could help us? Maybe only Hungary is so dealyed by new drugs.

    My 4 year old son just got ver the chicken-pox luckily, but the jungest didn’t cacth it.

    Thank you for any help,
    wish you all the best

    Barbara Kiss