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August 2019

AUGUST E-NEWSLETTER | SHARING STORIES TO BUILD AWARENESS

For more than 15 years, the National Blood Clot Alliance has been telling your stories – on our …

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Groundbreaking New Medication Option for AFib Patients Poses Less Bleeding Risk

People with atrial fibrillation (AFib) are at risk for bleeding while taking direct oral anticoagulants, but a groundbreaking new option…

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NBCA works to advance blood clot awareness, prevention, diagnosis & successful treatments to #stoptheclot.

"My husband and I are both ultra runners. On June

"My husband and I are both ultra runners. On June 27 of this year, we were both going for an early morning training run with him starting about five minutes behind me.

I had been experiencing shortness of breath for a few weeks before this run. Little things, such as bringing groceries in from the car or climbing stairs in my home, were tedious. I could tell something was wrong since I had just completed a 69-mile trail race the month before at more than 7,000 feet of elevation. I went to urgent care, where I was diagnosed with bronchitis and given a steroid shot and Z-pack.

The morning of my run, I was finishing up my last Z-pack pill and assumed my "bronchitis" was mostly better. As soon as I headed out the door, I knew I would have to turn around. I only got about a tenth of a mile from my house before I started seeing black spots and immediately passed out.

My neighbor found me and did CPR on me. Shortly after, the ambulance came and took me to the hospital. It turns out I had a massive pulmonary embolism and was in heart failure. I also hit my head during the fall.

Clot-buster medication was administered, and about two hours later, I started breathing on my own. But I developed a severe headache, which later turned out to be a stroke (brain hemorrhage) from the clot-busting medicine. I spent nearly three weeks in the hospital, including 12 days in the ICU.

I was healthy before this happened. I’d never had any major health issues in my adult life, and then one day I was close to dying. My only risk factors were a long car ride a couple of weeks prior, and I was also taking hormonal birth control.
My advice to others is to always, always listen to your body, and if you think something is off, have it checked out. You'll never regret listening to your body.

This experience made me realize that bad things can happen, but every day is a gift."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclotsurvivor #pulmonaryembolism #pe #ultrarunner #heartfailure #misdiagnosis #ICU #bloodclots #bloodclotawareness

"In April 2020, I had been feeling sick and brushe

"In April 2020, I had been feeling sick and brushed it off as allergies. Due to COVID, I had a telehealth visit and was diagnosed with bronchitis.

After four months of a lingering cough, I started to have a hard time breathing while doing the most menial things. Standing became so trying.

I finally went into the ER. Right before being released with a pneumonia diagnosis, the doctors found more in my CT scan: I had a massive pulmonary embolism in my right lung. The clot was so large it was blocking blood flow to my heart.

I had an emergency thrombectomy to break the clot up. Because of the PE paired with pneumonia, we found that my lung was partially dead, which is known as infarction.

In terms of risk factors, I had been taking estrogen-based birth control and I had a sedentary job. I was also later diagnosed with factor V Leiden.

Three years later, I live with the pain of taking deep breaths, but I am thankful to be alive. I’ve lost 70+ pounds and work on my health every day!"

Read more patient stories at the link in bio.

The blood clot awareness movement took an importan

The blood clot awareness movement took an important step forward this week with the introduction of bipartisan legislation aimed at preventing and treating blood clots on the national level.

Lisa Blunt Rochester (D-Del), introduced the bill in memory of her husband, Charles Rochester, who died of a pulmonary embolism. He tore his Achilles tendon playing a game of pickup basketball and blood clots traveled to his heart and lungs. He was 52.

The Charles Rochester Blood Clot Prevention and Treatment Act would direct the Centers for Disease Control and Prevention to launch a national campaign to increase public awareness of blood clot signs and symptoms.

It would also establish an advisory committee to help streamline effective diagnosis, treatment, and prevention of blood clots.

The National Blood Clot Alliance supported the introduction of the bill and applauds the progress that it represents.

“As advocates for those affected by blood clots, we encourage Congress to support this vital bill,” said Leslie Lake, president of NBCA. “Raising awareness and improving prevention and treatment measures will save lives and reduce the suffering of individuals and their families.”

Read more about the bill at the link in bio.

#stoptheclot #pulmonaryembolism #bloodclotawareness #bloodclotprevention #bloodclots

The highly anticipated TCS New York City Marathon

The highly anticipated TCS New York City Marathon is less than three months away and training for Team Stop the Clot runners is in full swing! Throughout the upcoming weeks, we’ll be showcasing each of the remarkable individuals who will embark on the iconic 26.2 miles in support of NBCA.

“I am choosing to run the 2023 TCS NYC Marathon as part of Team Stop the Clot in memory of my father, Larry St. Onge, who passed away in May 2021, and I'm asking that you support my fundraising goals!

My dad was president of DHL's Life Science and Health Care Sector, and his team's primary focus during the pandemic was ensuring personal protective equipment and Pfizer/Moderna vaccines made it to patients globally.

He got COVID-19 in January 2021, and it put him down. He received platelet transfusions and took time off from work for sickness for the first time that I could remember in my adult life.

In May 2021, about two weeks before receiving a full shoulder replacement, he felt tightness in his right calf muscle. He had done a leg workout the day prior, so he brushed it off and thought it was due to his workout. Fast forward two weeks, he received a shoulder replacement.

Four days after the procedure, he had a pulmonary embolism that led to an almost instantaneous heart attack. My sister came home to find him passed out. She thought he was seizing, but unfortunately he was already gone and had left this Earth. He was only 56.

I have a personal tie to NBCA, and I hope these funds will help spread awareness and save somebody else's dad, husband, brother, uncle, friend, and leader. My dad believed strongly in the power of the team, as do I, so I am relying on my team to help me cross the finish line and reach my personal fundraising goal. Thank you in advance for your support!”

Good luck in the race, Jillian! Read more and support her goal at the link in bio.

#stoptheclot #nycmarathon #tcsnycmarathon #nycmarathon2023 #teamstoptheclot

HAPPENING TODAY: We hope you’ll join this CDC we

HAPPENING TODAY: We hope you’ll join this CDC webinar at 2 p.m. addressing patients’ quality of life after a blood clot diagnosis.

Dr. Rachel Rosovsky will discuss results from a study she conducted in collaboration with the National Blood Clot Alliance. The findings of the CLUES Study (a Critical Look at Understanding the Emotional Suffering of Blood Clot Survivors) can help guide future patient care, education and research.

Dr. Jeffrey Kline will address the importance of empathy and the need for emergency department providers to be aware of biases that might distract them from recognizing the need to test for a pulmonary embolism.

We hope to see you there. Register at the link in bio.

#stoptheclot #cdcwebinar #bloodclotpatients #cluesstudy #drrachelrosovsky #drjeffreykline #vteresearch

HAPPENING TOMORROW: The Centers for Disease Contro

HAPPENING TOMORROW: The Centers for Disease Control and Prevention Division of Blood Disorders is offering a free webinar addressing the quality of life of patients following a blood clot diagnosis tomorrow, Sept. 28 at 2 p.m. ET.

Dr. Rachel Rosovsky will discuss the results from a study she conducted in collaboration with the National Blood Clot Alliance. The findings of the CLUES Study (a Critical Look at Understanding the Emotional Suffering of Blood Clot Survivors) can help guide future patient care, education and research.

Dr. Jeffrey Kline will address the importance of empathy and the need for emergency department providers to be aware of biases that might distract them from recognizing the need to test for a pulmonary embolism.

Register at the link in bio.

#stoptheclot #cdcwebinar #bloodclotpatients #cluesstudy #drrachelrosovsky #drjeffreykline #vteresearch

"I had my first deep vein thrombosis and pulmonary

"I had my first deep vein thrombosis and pulmonary embolism at 18 years old due to May-Thurner Syndrome. My symptoms were left lower abdomen pain and fainting.

I was told multiple times it was a miracle I was alive due to the clot burden. I spent 12 days in the hospital and had a temporary IVC filter and a permanent iliac stent placed. I was prescribed anticoagulants for 18 months.

After this, I suffered for many years with fainting, shortness of breath, inflammation, anxiety, decreased mobility, and chronic pain. I felt like I was going in circles for years trying to get answers to all my symptoms.

I recently had my second pulmonary embolism at 35. I was having extreme back pain and coughing up blood before my hospitalization and ICU stay. I will now be on blood thinners for life and was diagnosed with APS (antiphospholipid syndrome), antithrombin 3 deficiency, and chronic thromboembolic disease.

I am currently scheduling a pulmonary thromboendarterectomy to remove the old solidified chronic clots. I am hoping this will change my life.

Blood clotting disorders are rare, but with increased awareness and education, we can contribute to the data and field of science to create better outcomes and treatments for people who suffer from blood clots and blood clotting disorders.

Finding the Blood Clot Alliance has helped me feel less alone knowing there are other rare warriors out there."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #maythurnersyndrome #mts #antiphosphoidlipidsyndrome #aps #antithrombin3deficiency #chronicthromboembolicdisease #bloodclotsurvivor

Beyond the immediate health risks following a bloo

Beyond the immediate health risks following a blood clot diagnosis, patients often face a decline in their quality of life.

The Centers for Disease Control and Prevention Division of Blood Disorders is offering a free webinar addressing this topic on Sept. 28 at 2 p.m. ET.

Dr. Rachel Rosovsky will discuss results from a study she conducted in collaboration with the National Blood Clot Alliance. The findings of the CLUES Study (a Critical Look at Understanding the Emotional Suffering of Blood Clot Survivors) can help guide future patient care, education and research.

Dr. Jeffrey Kline will address the importance of empathy and the need for emergency department providers to be aware of biases that might distract them from recognizing the need to test for a pulmonary embolism.

Register at the link in bio.

#stoptheclot #cdcwebinar #bloodclotpatients #cluesstudy #drrachelrosovsky #drjeffreykline #vteresearch

"I remember going for a walk with my 10-month-old

"I remember going for a walk with my 10-month-old daughter the day I first felt the pain.

I thought I'd pulled a muscle in my shoulder while pushing a heavy pram up a steep hill. Over a few days, the dull, sharp pain became worse. It felt like it was wrapping around my shoulder and trying to drag me down. But I wasn't worried and just thought it would pass.

I put my daughter down to bed one night and began experiencing chest pains and shallow breathing. It wasn't till I coughed up some blood that I realized something wasn't right.

Before I had a chance to call an ambulance, I suddenly couldn't breathe at all. Luckily, my partner was with me and he called. After a few tests, I was told I had several small blood clots in my lungs. If I had left it any longer, they could have traveled to my heart.

I spent five long days away from my family in the hospital. I could barely walk for days, and couldn't shower or go to the toilet alone.

After 12+ months of being on blood thinners and having my second child, I’m finally off blood thinners and trying to live a healthy lifestyle for my kids.

Since my clot, I have major health anxiety, always thinking something is wrong. It is something I'll always live with, but it helps to know the signs and symptoms of a clot.

Before my clot, I had zero knowledge of blood clots. I was very lucky and forever grateful I'm able to watch my kids grow every day."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #pulmonaryembolism #pe #healthanxiety

September is National Atrial Fibrillation (AFib) A

September is National Atrial Fibrillation (AFib) Awareness Month. Did you know that more than 2.6 million Americans are affected by AFib, which can lead to blood clots, heart failure and stroke?

When you have AFib, your heart's normal rhythm becomes irregular due to disorganized electrical signals. This causes the upper chambers of your heart (atria) to beat chaotically and restricts blood from being pumped efficiently from your heart. As a result, the blood can sometimes pool in your heart and form a blood clot.

Learn more about AFib at the link in bio.

#stoptheclot #afib #atrialfibrillation #afibawareness #afibsucks #afibawarenessmonth #clotprovokedstroke

Telling your blood clot story is an act of courage

Telling your blood clot story is an act of courage and empathy that can have a positive impact on other survivors and their caregivers. It’s a powerful way to promote awareness, offer support, help you process your own experience, and contribute to the broader understanding and management of blood clots.

If you’ve experienced a blood clot, we hope you’ll consider sharing your story. You can do so here at the link in bio.

#stoptheclot #stoptheclotstory #storytelling #bloodclotstories #survivorstories #bloodclotsurvivor #bloodclotawareness

The highly anticipated TCS New York City Marathon

The highly anticipated TCS New York City Marathon is less than three months away and training for Team Stop the Clot runners is in full swing! Throughout the upcoming weeks, we’ll be showcasing each of the remarkable individuals that will embark on the iconic 26.2 miles in support of NBCA.

Sisters Lawson and Cameron Park are running the TCS NYC Marathon in memory of their grandfather, who died of a pulmonary embolism,

“My little sister Cameron and I are running for Team Stop the Clot in the NYC Marathon. Together we have committed to raising funds in honor of our grandfather, Grampy, who passed too young from a pulmonary embolism. Thankfully, my mom, sisters and I discovered our diagnosis of factor V Leiden shortly after, which has been immensely important in making decisions regarding our health and being proactive and aware.”

Good luck in the race, Lawson and Cameron! Thank you for all you do to Stop the Clot.

Read more about Cameron and Lawson’s story at the link in bio and support their marathon goal.

#stoptheclot #nycmarathon #tcsnycmarathon #nycmarathontraining #nycmarathonrunners #nycmarathon2023#teamstoptheclot #bloodclotawareness #factorvleiden

"In April 2021, I was diagnosed with a cerebral ve

"In April 2021, I was diagnosed with a cerebral venous sinus thrombosis. I was fortunate enough to have been diagnosed quickly following three days of headache, nausea, and vomiting. My risk factor was estrogen based oral contraceptives.

This diagnosis has taken a physical and emotional toll, but I am thankful for where I am. I want to raise awareness of all blood clots because this condition can happen to anyone regardless of age, gender, or health status.

I especially want to raise awareness of CVST. Symptoms often mimic more benign conditions, and diagnosis is often delayed, resulting in poorer outcomes.

I advise others to know your risk factors, make educated decisions regarding your health, and be patient and kind to yourself. Recovery is not linear. It does get better with time."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclotsurvivor #bloodclotawareness #cvst #brainbloodclot #cvstsurvivor

Question: I recently started taking Eliquis (apix

Question:

I recently started taking Eliquis (apixaban) after experiencing a DVT and PE. I’m concerned about how it interacts with other medications. Can you offer any insight? Also, if I switch to a different anticoagulant in the future, should I be concerned about different interactions?

Answer:

Yes, certain drugs can interact and cause anticoagulants to be less effective. Other medicines may also increase the risk of complications such as bleeding. Be sure to check with your doctor and/or pharmacist about all other medications and supplements you are taking to ensure safety and efficacy. This includes prescription and over-the-counter medications and supplements. The list of potential interactions and recommendations varies based on which anticoagulant you are taking so if you are considering switching from Eliquis to Xarelto for example, all other medications and supplements should be reviewed with your doctor and/or pharmacist once again.

***This information is provided for general education purposes only. You should not rely on information provided as a substitute for professional medical advice.

#stoptheclot #anticoagulants #eliquis #apixaban #pulmonaryembolism #pe #dvt #druginteractions #bloodclotawareness #bloodclotprevention #bloodclotssuck

Blood clots are not only potentially life-threaten

Blood clots are not only potentially life-threatening, they also result in a hidden struggle for survivors, affecting their quality of life in numerous ways.

The Centers for Disease Control and Prevention Division of Blood Disorders is offering a free webinar addressing this topic on Sept. 28 at 2 p.m. ET.

Dr. Rachel Rosovsky will discuss results from a study she conducted in collaboration with the National Blood Clot Alliance. The findings of the CLUES (a Critical Look at Understanding the Emotional Suffering of Blood Clot Survivors) study can help guide future patient care, education and research.

Dr. Jeffrey Kline will address the importance of empathy and the need for emergency department providers to be aware of biases that might distract them from recognizing the need to test for a pulmonary embolism.

Register at the link in bio.

#stoptheclot #cdcwebinar #bloodclotpatients #cluesstudy #drrachelrosovsky #drjeffreykline #vteresearch

"I was diagnosed with a pulmonary embolism in 2013

"I was diagnosed with a pulmonary embolism in 2013 as a side effect of steroids I was taking for nephrotic syndrome, a kidney disorder. I was on warfarin for two years until my doctor advised me to stop taking it.

In March 2023, I had sudden pain in my left leg that was the worst pain I’ve ever experienced. It felt like it was too heavy to move.

I was eventually diagnosed with extensive left leg deep vein thrombosis and required a couple of procedures. There was no explanation for the DVT. I wasn't on steroids at the time. Now I've been advised to take Eliquis for the rest of my life.

In terms of lifestyle changes, I have started exercising regularly and have started eating properly, I appreciate life more than ever.

My advice to others is to regularly move your body and never ignore your symptoms."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #deepveinthrombosis #dvt #bloodthinners #bloodclotawareness #bloodclotssuck

September is National Sickle Cell Awareness Month.

September is National Sickle Cell Awareness Month. Sickle cell disease (SCD), which disproportionately affects Black individuals, is a chronic condition that causes the red blood cells to harden and form a sickle shape.

In addition to severe and unpredictable pain, fatigue, and infections, SCD increases the risk of developing life-threatening blood clots.

Join us this month to support those living with SCD, and help spread awareness about SCD and its associated risks. Together we can make a difference!

#stoptheclot #sicklecelldisease #scd #sicklecellawarenessmonth #sicklecellmatters #knowyourrisk

Thank you to everyone who joined us for our first

Thank you to everyone who joined us for our first journal club session earlier this month! If you missed it, you can watch the recording at the link in bio.

#stoptheclot #journalclub #nbcajournalclub #bloodclotresearch #vteresearch #awarenessmatters #bloodclotrecovery

September 18 is National HIV/AIDS and Aging Awaren

September 18 is National HIV/AIDS and Aging Awareness Day, a day to address HIV’s impact on adults 50 and older.

Did you know that older age and HIV are both risk factors for blood clots? Patients who are diagnosed with HIV are at 2-10 times greater risk of developing a blood clot than the general population. Help reduce stigma and promote prevention, testing, and treatment among older adults. More info at the link in bio.

#stoptheclot #NHAAD #stophivtogether #knowyourrisk #hiv #aids #bloodclots #olderadults

Blood clot patients are at risk for bleeding while

Blood clot patients are at risk for bleeding while taking direct oral anticoagulants, but a groundbreaking new option is on the horizon.

Anthos Therapeutics announced today that AZALEA-TIMI 71 Phase 2 study in 1,287 patients with atrial fibrillation has been stopped early after meeting its primary endpoint. The study results showed abelacimab, a dual-acting factor XI / XIa inhibitor, demonstrated an unprecedented reduction in bleeding in the largest and longest head-to-head study comparing a factor XI inhibitor to the standard of care anticoagulant.

Leslie Lake, president of the National Blood Clot Alliance, said this could signal a more effective treatment option for patients.

“Abelacimab has the potential to provide a game-changing treatment option for all those patients who live with the daily fear of bleeding while taking current anticoagulants” she said. “We can now imagine a future where these patients are able to resume and enjoy activities that they are currently being forced to give up due to concerns associated with bleeding. We are thrilled that AZALEA-TIMI 71 has demonstrated such a positive outcome and excited about the promise that it offers to patients.”

Read more at the link in bio.

#stoptheclot #anthostherapeutics #doacs #abelacimab #bloodclotpatients #bleedingrisk #afibawareness #afib

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