Thrombotic Storm – a Rare, but Serious Unknown Blood Clot Disorder

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While most people who develop a blood clot in their vein have a deep vein thrombosis (DVT) or a blood clot in their lung (pulmonary embolism), a very small number of people who develop blood clots have a more serious and often life-threatening syndrome called Thrombotic Storm. People with Thrombotic Storm experience more than one blood clot in a short period of time. These clots occur in different and sometimes unusual locations in the body. This very aggressive and serious form of blood clotting is often difficult to treat, and there is very little research or documentation of this disorder.

Although research on Thrombotic Storm is still in nascent stages, scientists believe the disorder may be associated with an existing condition or situation that predisposes a person to blood clots such as cancer, infections, or pregnancy. It has also been seen in patients with Antiphospholipid Syndrome (APS), a disorder that causes blood clots as well as pregnancy complications including miscarriages and preeclampsia. When Thrombotic Storm is seen in patients with APS, the condition is referred to as ‘catastrophic Antiphospholipid Syndrome’, or catastrophic APS (CAPS).

JJ VanceThrombotic Storm has been seen in children and adults Recently a research study has been spearheaded by two doctors at the John P. Hussman Institute for Human Genomics who have experienced the torment of Thrombotic Storm firsthand. On December 12, 1998, Margaret A. Pericak-Vance and Jeffery M. Vance lost their son, 14-year-old Jeffery Joseph Vance, to the disorder (  See photo left.

The healthy young athlete, scholar, brother and extraordinary young person wanted to grow up and be a geneticist like his parents. He was a gentle and generous person, giving his time and energy to others.  Now the research investigation into the unexpected and fatal blood clot that caused his death may give hope to other families who have suffered similar tragedies. The Vance’s are not only raising awareness of these deadly form of blood clots  among doctors, but they have also teamed up with six different institutions representing seven unique specialties, in order to elucidate the symptoms, progression, and possible genetic factors that contribute to this rare, but serious disorder.  Dr. Thomas Ortel from Duke University, one of JJ’s doctors, is the lead clinical investigator of this study.

The researchers affiliated with the study recently met in Miami in March and used their medical diversity to shape a definition for Thrombotic Storm based on research from different case studies of the disorder representing previous and current data from each specialty. Because Thrombotic Storm had never been given a concrete definition, the symptoms have often been overlooked as another condition, which can be lethal since Thrombotic Storm needs to be treated quickly and aggressively.

These researchers are now turning their focus towards recruiting patients and raising awareness of the disorder.  Researchers will track patients over time and use detailed data from family history information to identify any potentially inherited patterns in the families of patients with Thrombotic Storm. This will help researchers identify genetic factors that may contribute to this syndrome, and aid in the search for ways to predict, prevent, and treat Thrombotic Storm.

Individuals who were age 55 years or younger at the time they experienced two or more of the following may be eligible to participate:

  • Two or more clots in a short period of time
  • Clot(s) in an unusual location (e.g. not the leg or lung)
  • Clots progressed, or the clots came back when not expected to
  • The response to treatment did not go the way the doctor thought it should (e.g. there was a poor or unusual response to treatment)

For those who would like more information about the study, they may contact study staff at 877-740-7744 or via e-mail at  In addition, you may visit the following websites:


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10 Responses to "Thrombotic Storm – a Rare, but Serious Unknown Blood Clot Disorder"

  1. Jacque
    Jacque Posted on April 10, 2014 at 11:33 pm

    My brother-in-law is going through something that sounds like the disorder called Thrombotic Storm. His doctors are not sure what has caused his condition. He has in the hundreds of blood clots in both lungs and in both legs. It came on sudden, about a week, he had no pain and no problems breathing until the day he went in the hospital. He did have lose of apatite and he was experiencing weakness. In 2003 he was in hospital for a blood clot or clots in his stomach, and they were not sure what that was from ? He has to take vitamin B shots every month (his body doesn’t absorb the pills) and he is hypo-glycemic. I would really like to find out if this is gene or what because I worry about my husband which is the oldest. Look forward to some in-put on this.

  2. arseniapleas
    arseniapleas Posted on December 9, 2014 at 8:50 pm

    My husband is going threw something similar to you id like to see what treatments are out their

  3. beverly spann
    beverly spann Posted on January 29, 2016 at 3:47 am

    I’m currently experiencing something similar to this today. In 2006 I was told that there was some internal bleeding within my stomach area, but they don’t know why or where the bleeding was coming from. I was given something to stop the bleeding, but instead of stopping the bleeding, my blood clotted immediately putting me into a coma for several weeks. When I finally woke up I was told that a massive blood clot in my left leg developed along with smaller clots in my right leg. A filter was placed through my neck and down in my chest to keep the clots from traveling to my heart and lungs. Because of the filter, I experience severe muscle spasms that can only be controlled with medications like flexiril and neurontin. This medicine puts me to sleep and I am unable to function like ordinary people on a day to day basis. I was told I have some type of rare blood disease that is only seen in one out of a million people. How I got this disorder is a mystery. Nothing like this runs in my family as far as I know. I had to learn to walk again because the left leg was so large and I was unable to sit or stand. Today I try hard to live a normal life, but the swelling continues in my left leg and thigh accompanied with spinal pain in my lower back. I work PT and by the time I get home, the left leg and foot is so swollen, all I can do is prop it, take my medicines and try to keep still. I’m very scared about this and can’t seem to find any answer to my condition.

  4. Alisha
    Alisha Posted on March 30, 2016 at 3:02 pm

    Hi my dad had chemotherapy treatment in 2013 and recently he got a blood clot in his right leg but also after a month or two he has got a blot clot in the artery and I don’t know what’s going to happen I’m really scared and I heard them talking I’m 13 please reply quickly

    • SW
      SW Posted on March 30, 2016 at 5:17 pm

      Hi Alisha, please send us an email at with your question and although we cannot provide medical advice, we will try to provide some helpful information.

  5. Meghan Moran
    Meghan Moran Posted on July 28, 2016 at 10:22 pm

    I believe I may be a candidate for this trial and/or clinic. In 2007 I was 25 years old,I went to my Local ER with extreme stomach pain and nausea. I was unable to hold down water. They admitted me because I was in pain. My stats, temp and other vitals were fine. Within a few hours I went in to heart failure, and went into ICU. They did ct scans with contrast every test possible, all negative. It wasn’t until my kidneys were failing and the Gastrologist sis an upper GI scope that they found that my Mesentery had blown out and my entire body was gangrenous. After many (8) intestinal surgeries and now living with Short Gut Syndrome, 80 centimeters remaining, I continue to have rare attacks. I was put on Warfarin for life due to risk. After my team of specialist reviewed my history, they allowd me to stop Coumadin and live a normal life. Almost one year to the day I landed back in the ER with abdominal pain. Every scan was taken and again nothing showed. This time my GI did a colonoscopy and biopsy, which showed ischemic colitis. The angiogram showed over 50 small blood clots all leading to my colon. I just got released again now 2016 back on warfarin for a clot. I have been back on my blood thinners since 2012, and I am now determined to find an answer.

  6. April d Bridgeman
    April d Bridgeman Posted on August 9, 2016 at 7:15 pm

    I have had pain for years and would love to take part in this study! On July 2nd of this year was a normal day like any other. I take care of children in my home and was dreading the day because the pain in my legs. For years I haven’t been able to extend my toes because of severe calf pain. On this particular day my left leg was hurting so bad I could hardly stand it. I called my husband to come home from work so I could go to the ER. The doctor in the ER assumed It was Siatica.(never really done any kind of exam)and sent me home. After being home about 30 minutes the pain with the pain I decided to see my dr. By this time the pain and numbness was unbearable and my arm turned blue from the elbow down. My doctor also noticed some face drooping and sent me to the Er for a scat scan Thinking it was a stroke.Cat scan came back fine so I was sent home. On The 3rd. Saturday morning I awoke with pain as always. Didn’t go to the Er because I had fear of being just pushed to the side again. Been trying to get a diagnosis for two years so I had lost all hope and faith in physicians. Anyway,by 1: 00 pm. I suddenly lost the use of my legs. I could still feel them a littke but was unable to walk. This lasted for about 3 hours. After this time I could walk but not well. Mind you I still had a blue arm and the feeling from that alone was maddening. I decided to get up and try to function an denjoy family time on the weekend. By Monday I still had numbness but went to my sons for the 4th. This night I decided to call my dr. First thing Tuesday.(had been emailing my dr. Throughout the weekend of symtoms so I didn’t forget anything)I saw my dr. And ask her to put me in the hospital to see if they could find the problem.. I had no radial pulse and after a few days they found the clot in my left arm. After several attemps and A Icu stay they were unable to remove the clot. They did many test but couldn’t find a cause. The de. There believe it’s hereditary because my mother and brother experience the same things but still don’t have a diagnosis. My mother passed and had strokes a lot. After being put on blood thinner I have been pain free. I truly believe I was dealing with clots all along. I even was passing them in my bows. My calfs feel great and just amazed how much better I feel. I still have small episodes that I’m sure are clots but I make it through. I see a hematoligis on Friday and pray they can figure this out. I am in fear for the lives of my children . Thanks forfor listening . April

  7. Joy
    Joy Posted on September 1, 2016 at 7:07 pm

    We lost our 42year old son this January due to massive blood clots in his lungs and brain. He was a healthy man until he began to have some pain in his chest and developed a cough. He was seen four times by a physician with 2 chest x-rays and was misdiagnosed with pneumonia. He was given antibiotics and sent home each time. He suffered some type of event that made his vomit and pass out and unable to breath. When he came to he called and we rushed him to the hospital where they administered anticoagulants. The next morning he suffered a hemorrhagic stroke which paralyzed his right side, his symptoms resolved with no residual impairments within a day. The anticoagulant treatment was discontinued due to the bleeding. His condition stabilized for a few days and he was moved out of ICU and was seen by physical therapy for discharge home. Unfortunately, his cough and chest tightness resumed, he coded one week to the day and hour of the hemorrhagic stroke. There are no known conditions in our family to result in a weakening of blood vessels. The treating physicians did not feel that an embolism caused his death, but rather that multiple blood clots “re-grew” in his lungs and brain. The physician said that he had suffered multiple stokes, not TIAs but multiple hemorrhagic strokes within the recent past. There were no signs that he had ever suffered a stroke in the past. The physicians sent samples to the MAYO but none of those results has lead to a diagnosis. His uncle passed away at the same age of 42 from a “rare blood disorder”. There are multiple children in our large family that may be at risk, we would be happy for any assistance.

  8. Mandy
    Mandy Posted on September 9, 2016 at 12:57 am

    I have just lost my 28yr old daughter who was diagnosed with cancer 5mths ago and was told she was terminal on the 22/08/16 she had 2 blood clots in her leg and one in her lung, she was to transferred to St Barnabas on 26/08/16 for pain and symptom and pain control, she left Brighton hospital in a ok condition arrived at St Barnabas in a very bad way we were told within 30mins that she would loss her life due to this condition, from traveling from Brighton blood clots had formed in her stomach and was going up her veins she died peacefully 3 days latter leaving a husband and 3 children aged just 4,5 and 6 why is life so cruel

  9. Maz
    Maz Posted on September 13, 2016 at 11:48 pm

    Dear Mandy, thank you for pointing me to this website about Thrombotic Storm. I never knew of this condition until now. My daughter Laura had shortness of breath for months whilst she was pregnant but docs put it down to Asthma. Her legs swelled and her left calf reached 52cms shortly before she died. She was on blood thinning drugs for 6 weeks after her c-section on 29th June 2016. She had vomited and then was unable to breath before she passed out and died. The coroner said she had a massive Saddle Pulmonary Embolism and a large DVT in her left leg. Apparently had they known she probably still would have died as it had built up in both sides of her lungs. Life can be cruel and we will never get over losing her. We have to be strong for her boys aged 7yrs and 11 weeks. Thank you for your donation. Take care Maz x