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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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NBCA Launches Season 2 of Taking a Breath: A Stop the Clot Podcast

The National Blood Clot Alliance (NBCA) is thrilled to launch Season Two of Taking a Breath: A Stop the Clot…

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Dr. Suman Wasan Joins NBCA’s Medical and Scientific Advisory Board

The National Blood Clot Alliance is thrilled to welcome Dr. Suman Wasan to our Medical and Scientific Advisory Board. Dr.…

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📅 Mark your calendars — Giving Tuesday is alm

📅 Mark your calendars — Giving Tuesday is almost here!

Giving Tuesday—a global day of giving and kindness celebrated on the Tuesday after Thanksgiving—is less than two weeks away. This year, we’re highlighting The Power of Us: driving change, spreading awareness, and saving lives together. It’s a collective effort—patients, caregivers, clinicians, and communities all working side by side to make a difference and save lives.

This Giving Tuesday, your generosity can amplify the power of our community. Together, we can expand our impact in 2025, delivering lifesaving education, awareness, and resources to communities nationwide.

Join us in driving change. Save the date for Giving Tuesday on December 3, and please consider supporting NBCA on this global day of generosity. Together, we can save lives.

📣 Want to super charge your support? Set up a fundraiser to benefit NBCA for Giving Tuesday at the link in bio.

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

"Not long after I turned 21, I started to notice t

"Not long after I turned 21, I started to notice the veins on the left side of my chest becoming extremely prominent. My left arm felt like it was falling asleep constantly throughout the day. It was strange, but I just assumed I had pulled a muscle or slept on it wrong.

I didn’t feel any pain, so I ignored it for about a week until I noticed my arm turning purple. It kept getting darker and more swollen so I rushed to the ER in a panic. I was instantly dismissed and the doctor told me I probably just overextended my arm, and that I was too young for it to be a clot.

I knew nothing about clots so I didn’t put up a fight, but I still felt like something was really wrong. I saw my primary doctor about a week later and she was furious that the ER dismissed my concerns. She immediately ordered me a CT scan, blood tests, and an X-ray, and within a few days my life changed drastically.

I got a call saying I had a DVT under my collarbone and a pulmonary embolism, caused by a condition called venous thoracic outlet syndrome. I started daily enoxaparin injections that night, and was contacted by a vascular surgeon who told me I would need two procedures. The first was a thrombectomy, and the second was a first rib resection.

The whole process was terrifying and it all happened so fast. I had to drop out of college and resign from a job I loved. It was really hard to see my friends live regular lives while I spent the year in recovery.

Luckily I have an incredibly strong support system and I’m surrounded by so much love. I wouldn’t have been able to do it without my family, partner, and friends. It took a lot longer to heal than I thought, but 10 months later I feel like I’m finally getting back to normal. I’ve just come off blood thinners and it feels amazing. Plus, I got to keep my rib in a cup which is really cool.

When you’re young and healthy you feel invincible, and being faced with a sliver of your mortality is life-changing. I value and prioritize my health so much more now. It’s extremely isolating to go through medical turmoil at this age. It helped so much to read other people’s stories."

Read more patient stories at the link in bio.

#stoptheclot

Anticoagulants are lifesaving medications that hel

Anticoagulants are lifesaving medications that help in preventing and treating blood clots. However, they come with potential risks—most notably, an increased risk of bleeding. Understanding the different types of bleeding and how to manage them is crucial for patients on anticoagulant therapy.

In our December PEP Talk, we’ll explore the concept of nuisance bleeding, often referred to as "patient-relevant bleeding," and how it differs from clinically relevant non-major bleeding (CRNMB), and major bleeding, and when medical intervention is necessary.

We’ll also provide practical strategies to help patients reduce their bleeding risk, stay safe, and maintain their quality of life while benefiting from lifesaving anticoagulant therapy, as well as future outlook for new medication options. We hope you join us for this informative session!

Register at the link in bio.

#stoptheclot #peptalk #bloodclots #vte #bloodclotawareness #bloodcloteducation #anticoagulants #bloodthinners #bleeding #nuisancebleeding #patientrelevantbleeding

After being diagnosed with blood clots in July, Ch

After being diagnosed with blood clots in July, Christian Barmore of the New England Patriots made an emotional return to the field on Sunday.

The 25-year-old defensive tackle expressed deep gratitude to his teammates and coaches for their support during his recovery. His powerful message: “Never give up and don’t quit... I told myself every day people are supporting me, and I love everybody here.”

Christian, thank you for using your platform to raise awareness about life-threatening blood clots. We’re cheering for you every step of the way!

A huge shoutout to the Patriots’ medical team for catching the warning signs and to his teammates and coaches for their unwavering support.

Barmore's story is a reminder to stay vigilant about blood clot awareness. Early detection and support can save lives. Learn about the signs and symptoms of blood clots at the link in bio.

#stoptheclot #bloodclots #vte #newenglandpatriots #christianbarmore #dvt #pe #americanfootball #nfl #bloodclotawareness #bloodclotsurvivor #knowyourrisk @barmore_ @patriots @NFL

"I began having a belly ache on Friday, August 3,

"I began having a belly ache on Friday, August 3, 2012. I was unable to use the restroom. The only relief I got was laying in hot water in the bathtub. I did this every half hour or so. It continued to worsen, and by Sunday, August 5, it was almost unbearable. Finally, my wife insisted I go to the hospital.

We were in the ER for about five hours, running test after test. Finally, they came in and said I had two blood clots, one in my portal vein, which carries blood from the abdominal organs to the liver, and the other in my lower mesentery vein, which drains blood from the lower gastrointestinal tract and carries it to the liver.

I was admitted, and after two days they sent me to another hospital where I could receive treatment and specialists could look after me.

On my first day in this hospital, my mom had a major stroke and passed away. My wife asked if I could attend her funeral, and the doctor said absolutely not. He then emphasized to my wife that I was critical, and I might not survive.

Over the next few days, I had countless relatives and friends come to visit me in the hospital, although I don’t recall most of my time there.

By the grace of God, I fully recovered. I spent almost three weeks hospitalized until the clots finally dissolved. I was diagnosed with factor V Leiden homozygous and returned to work two weeks later.
The doctors told me I was a very fortunate man, and my prognosis was great. I have led a normal life for the past 15 years although I’m now a lifer on blood thinners.

In addition to factor V Leiden, my other risk factor was a previous clot behind my right knee two years earlier. I wasn’t hospitalized but spent five days in bed with daily blood thinner injections.
Blood clots are nothing to mess around with."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #vte #mvt #pvt #bloodclotsurvivor #bloodclotpatient #bloodthinners #anticoagulants #bloodclotawareness #bloodcloteducation

Did you know that our New Patient Resource Guide w

Did you know that our New Patient Resource Guide was updated this year?

Since its debut in 2022, blood clot survivors have turned to this guide for trusted information and support during the first year after experiencing deep vein thrombosis (DVT) or a pulmonary embolism (PE). Packed with resources, it’s designed to empower patients on their journey to recovery.

Get your guide here and share with others who might need it at the link in bio.

#stoptheclot #bloodclots #bloodclotsurvivor #bloodclotdiagnosis #bloodclotpatient #pesurvivor #bloodcloteducation #bloodclotawareness #newpatientguide #dvt #pe

"On September 22, 2013, I realized just how fragil

"On September 22, 2013, I realized just how fragile life can be.

Following a sprint to catch my evening train, I found a seat, sat down, caught my breath, and experienced a sudden shooting pain in my head. As I neared my destination, the headache dissipated, but when I stood to leave the train, I felt terrible pain across my chest and back along with a tremendous feeling of dread.

Thankfully, my sister was at the train station waiting for me. I told her what I had experienced and asked that she take me to an emergency room. She wanted to call 9-1-1 but I insisted otherwise. Ironically, as we approached the hospital, my pain had dissipated.

After a thorough exam by a nurse practitioner and a blood test, I was sent for a CT scan. I remained in good spirits and was hopeful that the positive blood test result was related to the DVT I had experienced five years prior.

I couldn’t have been more wrong. I’ll never forget the look on the nurse’s face when she delivered the news – 'I’m so sorry, you have multiple bilateral, sub-acute, pulmonary emboli.'

I was immediately rolled out of the ER holding area and to a bed directly across from the nurse’s station. By midnight I was in the ICU. Two days later I received a catheter-directed thrombolysis and was administered the Sacrament of Anointing of the Sick by a priest. In total, I spent 15 days in the hospital.

Upon my return home, I wanted to jump back into life and quickly realized I couldn’t.

In the days, weeks, and months that followed, I experienced aphasia, chest pain, panic attacks, depression, and extreme anxiety. I found few resources to help me navigate my recovery. Even when I advocated with my healthcare providers, they offered little insight about what I was experiencing other than telling me that I'm lucky to be alive.

I later tested positive for protein C deficiency, as did my two children and sister.

I only just started to become familiar with NBCA and recently volunteered to support its advocacy efforts. I'm looking forward to doing all I can to support the organization."

Read more stories at the link in bio.

#stoptheclot #stoptheclotstory

Today is World Diabetes Day. If you have diabetes,

Today is World Diabetes Day. If you have diabetes, you may be at increased risk for a blood clot.

Both Type 1 and Type 2 diabetes can lead to conditions that raise the likelihood of clot formation. Understanding your risk and taking steps to protect yourself is crucial.

How Diabetes Increases Your Blood Clot Risk:

- Damage to blood vessels: High blood sugar levels contribute to inflammation and damage to blood vessels, increasing clotting risk.

- Obesity and sedentary lifestyle: Many individuals with diabetes also experience obesity and lower physical activity, both of which contribute to the risk for blood clots.

- Cardiovascular conditions: Diabetes is linked to heart disease, stroke, and conditions like atrial fibrillation and high blood pressure, all of which increase the likelihood of blood clots.

- Poor circulation: Diabetes can lead to peripheral artery disease and other circulatory issues that make blood clots more likely, particularly in the legs.

What You Can Do:

Regular physical activity, managing your blood sugar, and staying mobile are key to reducing your risk. It’s also important to recognize the signs of blood clots, such as swelling, pain, or redness in the legs, or sudden shortness of breath.

If you have diabetes, take a moment to assess your risk for blood clots via the link in bio.

Know someone with diabetes? Share this post with them to help raise awareness about blood clot risks and prevention.

#stoptheclot #bloodclots #vte #worlddiabetesday #diabetes #bloodclotawareness #diabetesawareness #knowyourrisk #bloodcloteducation #bloodclotrisk #WDD

NBCA is returning as an official charity partner o

NBCA is returning as an official charity partner of the TD Five Boro Bike Tour, hosted by Bike New York!

“On Sunday, May 4, 2025, cyclists of all skill levels will come from around the world to roll through every borough of New York City on streets totally free of cars. For one day, the roads are yours, the bridges are yours, the city is yours – there’s no better way to experience NYC.”

NBCA's Team Stop the Clot is growing, with 25 bibs up for grabs this year! Applications are now being accepted. Learn more and apply at the link in bio, or bit.ly/NBCA5Boro2025

#stoptheclot #teamstoptheclot #TDFiveBoroBikeTour #BikeNewYork #bikenyc #nyccycling #bicycling
#bloodclotawareness #bloodclotprevention #charityride #bloodclotsurvivor #bloodclotpatient

🌟November 13 is CTEPH Awareness Day 🌟 Chron

🌟November 13 is CTEPH Awareness Day 🌟

Chronic thromboembolic pulmonary hypertension (CTEPH) is a serious complication that can follow a pulmonary embolism. CTEPH can occur when blood clots don't fully dissolve, causing high blood pressure in the lungs and potentially leading to heart failure if untreated.

Last night, the National Blood Clot Alliance hosted a PEP Talk on CTEPH and other complications that can occur after a blood clot with Dr. Timothy Fernandes, pulmonologist at UC San Diego Health. Dr. Fernandes explained that CTEPH is under-diagnosed and doctors need to listen to their patients when describing their symptoms.

By understanding CTEPH, we can work to support those at risk and improve early detection and treatment. If you missed the PEP Talk, you can watch it along with our other sessions at the link in bio.

#stoptheclot #bloodclots #cteph #ctephawarenessday #vte #pulmonaryembolism #bloodclotawareness #bloodcloteducation #ctephtreatment

"In Dec 2022, I had the worst pain in my left side

"In Dec 2022, I had the worst pain in my left side of my buttocks after working out. Being a physical therapist and a retired figure skater, I assumed I had strained a muscle until I was unable to walk or bear weight on my left leg.

After three ER visits, I was finally diagnosed with a massive DVT that extended from my left groin to right below my heart, a collapsed left iliac vein, and multiple clots in my left lung.

ER doctors initially signed it off as a muscle strain and anxiety. I knew something was horribly wrong and refused to leave the hospital during the third visit. I was in the ICU with heparin and tissue plasminogen activator (iPA) and the clot did not decrease in size. I had an emergency thrombectomy and later a stent was placed to keep my left iliac vein open.

We learned my clots were caused by four things: Factor II deficiency clotting disorder, birth control, May-Thurner syndrome, and a suspected previous injury to my iliac vein from a prior heart procedure. I have no family history of clotting disorders.

Doctors said I’m lucky to be alive because they believe my clot started about 10 years before it was found. I had no symptoms until it became a crisis. I’m blessed to be alive. I am thankful for my workout class and my medical team that saved my life. God’s not done with me here.

I will be on blood thinners for life and have close monitoring to ensure I don’t clot again. As a healthcare worker, I’m a strong advocate for my patients regarding blood clot education and have used my story to educate my peers about blood clots and disparities in the diagnosis of clots. I was a 32 year old healthy female and was initially overlooked due to my age and good health.

I’m so thankful for NBCA and all they do to advocate and educate as they greatly helped me in my lifelong journey of being a #bloodclotsurvivor. I wear my Stop the Clot pin proudly on my work badge now.

You are your best advocate and it’s possible to live an active and healthy lifestyle after clots. You are not your diagnosis, it just is a part of your story."

#stoptheclot #stoptheclotstory #vte #bloodclots #factor2 #maythurnersyndrome #mts #dvt #pe #birthcontrol #misdiagnosed

HAPPENING TONIGHT: Join us tonight at 7 p.m. ET fo

HAPPENING TONIGHT: Join us tonight at 7 p.m. ET for our November PEP Talk on post-thrombotic syndrome (PTS), chronic thromboembolic pulmonary hypertension (CTEPH) and chronic thromboembolic disease (CTED).

Dr. Timothy Fernandes, pulmonologist with UC San Diego Health, will be with us to discuss how to manage these conditions.

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

#stoptheclot #bloodclots #vte #cted #pts #postthromboticsyndrome #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

HAPPENING TOMORROW: Join us for our November PEP T

HAPPENING TOMORROW: Join us for our November PEP Talk on Tuesday, November 12 at 7 p.m. ET as we explore long-term health conditions that can occur after a DVT or PE.

Dr. Timothy Fernandes, pulmonologist at UC San Diego Health, will share insights on managing post-thrombotic syndrome (PTS), chronic thromboembolic pulmonary hypertension (CTEPH) and chronic thromboembolic disease (CTED).

There is still time to register! We hope to see you for this informative session.

📅 Date: Tuesday, November 12

🕖 Time: 7 p.m. ET

💻 Where: bit.ly/Nov2024PEPTalk

#stoptheclot #bloodclots #vte #cted #pts #postthromboticsyndrome #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

On this Veteran’s Day, Stephanie “Jersey” Ma

On this Veteran’s Day, Stephanie “Jersey” Martinez gives a glimpse into her life as a former active duty service member, wife, mother, Thrombassador, NBCA staff member, and passionate blood clot awareness advocate.

Did you know that military personnel and veterans are at an increased risk for blood clots?

Several factors contribute to this elevated risk, including:

1. Injuries and surgeries: Combat-related injuries, surgeries, and prolonged immobility during recovery can increase clotting risk. These events often result in damage to blood vessels or periods of immobility, both of which are key risk factors.

2. Immobilization and long travel: Veterans often endure long travel times or may experience periods of restricted mobility, which are known to increase the risk of clots.

3. High levels of physical and emotional stress: Stress and conditions like post-traumatic stress disorder (PTSD), which is more common among veterans, can contribute to inflammation, which raises the risk for blood clots.

4. Underlying health conditions: Higher rates of hypertension, diabetes, and other cardiovascular issues in the veteran population can compound clotting risk.

Increased awareness among veterans and their healthcare providers is critical, as early detection and intervention are essential in preventing serious complications from blood clots.

#stoptheclot #stoptheclotstory #bloodclots #vte #dvt #deepveinthrombosis #ijvt #jugularclot #bloodclotawareness #bloodclotprevention #bloodclotsurvivor #bloodclotstory

In honor of Veteran’s Day, we’re sharing the b

In honor of Veteran’s Day, we’re sharing the blood clot survival story of Stephanie “Jersey” Martinez, development and outreach coordinator at the National Blood Clot Alliance and a U.S. Navy veteran.

“On Nov. 17, 2021, I had a right knee arthroscopy, an outpatient procedure that only took only 15 minutes. I was told I would be back walking in two to three weeks. However, my healing time would be severely prolonged.

Two days after my procedure, I began having a painful charley horse in my right calf muscle. A day after the pain began, I started to see discoloration and swelling in my leg. I went into the ER and had an ultrasound, which showed that I had a blood clot, or deep vein thrombosis, in my right tibial vein, which is in the shin area.

I was sent home on rivaroxaban. A day later, I began to have pain, weakness, and swelling in my left arm. My face was also tingling and I knew something wasn’t right. I went back to ER and was told that I seemed fine and I should just go home. I refused and said, ‘No, please check!’

The hospital then performed an ultrasound on my upper left extremity and discovered a second clot within my left internal jugular. The doctor who almost sent me home was very apologetic and said I needed to be admitted immediately and put on a heparin drip. I found out that if had I listened to her initial suggestion, I could have gone home and died that night.

They were shocked that I had two clots at the same time, with one being in a dangerous and rare location given my age. I’ve been told by many doctors that my situation shouldn’t have happened from a 15-minute procedure, but it did.

In 2023, after many hospital visits, genetic testing, heart ECHOs, brain and CT scans, and MRIs, the cause is unknown and considered unprovoked. The clot in my tibial vein dissolved, but the DVT in my left internal jugular is chronic and still present. I am now on blood thinners indefinitely.

This situation changed my life, as I was super healthy before this. I was a personal trainer and nutrition coach for 7 years. However, I now see health in a new way. I achieved my Master’s Degree in Health Promotion so I can help bring a change to our community.”

If you’ve experienced a pulmonary embolism, or a

If you’ve experienced a pulmonary embolism, or a blood clot in the lungs, watch out for these signs of chronic thromboembolic pulmonary hypertension, or CTEPH. You might have CTEPH if you notice any of these symptoms, even if you haven’t been formally diagnosed:

Common symptoms of CTEPH include:

- Shortness of breath, especially when exercising
- Chest pain or tightness
- Tiring quickly, especially when active
- Swelling in the legs, ankles, or abdomen
- Dizziness, lightheadedness, or fainting
- Feeling the heart pounding in the chest
- Coughing up blood
- Discoloration of the fingers and toes

If these symptoms sound familiar, speak with your healthcare provider about options for managing CTEPH and attend our next PEP Talk on Tuesday, Nov. 12 at 7 p.m. where we’ll discuss CTEPH and other long-term conditions that can occur after a blood clot. Register at the link in bio.

#stoptheclot #bloodclots #vte #cteph #pts #postthromboticsyndrome #cted #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

Did you know that pulmonary embolism survivors are

Did you know that pulmonary embolism survivors are at risk for long-term conditions that can affect quality of life?

Studies suggest that 3-5% of patients with a history of PE may develop chronic thromboembolic disease (CTED). Unlike chronic thromboembolic pulmonary hypertension (CTEPH), which involves elevated pressure in the pulmonary arteries, CTED involves chronic blockage without increased pulmonary pressure.

If you experience any of these symptoms, you should see your healthcare provider for diagnosis and treatment:

- Shortness of breath, which may worsen during physical exertion
- Feeling fatigued quickly, especially after exercising
- Chest pain or tightness
- Dizziness, lightheadedness, or fainting
- Swelling in the legs, ankles, or abdomen
- Heart palpitations, or the feeling of the heart pounding in the chest

To learn more, attend our next PEP Talk on Tuesday, Nov. 12 at 7 p.m. where we’ll discuss CTED and other long-term conditions that can occur after a blood clot. Register at the link in bio.

#stoptheclot #bloodclots #vte #cted #pts #postthromboticsyndrome #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

"On July 12, 2024, I started to have the worst hea

"On July 12, 2024, I started to have the worst headache I have ever experienced. I was nauseous and had blurry vision on and off, and I felt like one of my eyes was about to pop out of my face.

I went to the ER twice. Both times they treated me with the 'migraine cocktail' that did absolutely nothing. I was in so much pain all I could do was cry. They didn’t believe my pain and kept assuming I wanted stronger meds because I wanted to abuse them.

When I went to the ER for the second time, I demanded that they give me a CT because there had to be something wrong. Immediately, they noticed a 'brain bleed' and transferred me to a larger hospital.

There, we found that it was not a brain bleed but cerebral venous sinus thrombosis (CVST). I had multiple large clusters of blood clots in multiple veins of my brain.

All of the providers were shocked that I was still able to normally walk and talk. I was immediately transferred to the ICU where I spent six long days. We are waiting on the results to determine if I have a clotting disorder.

My life has done a complete turnaround. No more roughhousing with my sons. I’m no longer the loud, fun, life of the party anymore. Life is just pretty boring. I now have to give myself shots twice a day, something I haven’t quite gotten used to yet.

This experience has taught me to advocate for myself at all times. Ask for second opinions and don’t let them discharge you if you don’t feel comfortable with it."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #vte #bloodclots #cvst #brainbloodclots #bloodclotawareness #bloodclotsurvivor #bloodclotpatient #bloodcloteducation

🏅 Team Stop the Clot Conquers the 2024 NYC Mara

🏅 Team Stop the Clot Conquers the 2024 NYC Marathon!

After months of physical training and diligent fundraising to support NBCA’s blood clot awareness and education efforts, the 17 runners of Team Stop the Clot completed the New York City Marathon on Sunday!

They not only crossed the finish line but also raised nearly $100,000 for VTE awareness and prevention. We couldn’t be prouder!

A huge thank you to our runners, supporters, and everyone who contributed to the team. Your dedication fuels NBCA’s mission to provide life-saving education and resources to those affected by blood clots.

It was a thrill watching our runners zip past us in their red and white polka dots! We hope you enjoy this video of the day, which includes each runner’s reason for joining the team.

If you would like to join Team Stop the Clot in the 2025 NYC Marathon, keep an eye out for our call for applications in January 2025.

Applications to join Team Stop the Clot in the 2025 United Airlines NYC Half Marathon are now open. Find it at the link in bio.

#stoptheclot #teamstoptheclot #bloodclots #vte #nycmarathon #charityrace #charityteam #bloodclotawareness #bloodclotsurvivor

If you’ve experienced deep vein thrombosis, or a

If you’ve experienced deep vein thrombosis, or a blood clot in your leg, watch out for these signs of post-thrombotic syndrome (PTS). You might have PTS if you notice any of these symptoms, even if you haven’t been formally diagnosed:

Common symptoms of PTS include:

- Swelling in the leg (often worse after standing or sitting for long periods)
- Pain, heaviness, or aching
- Skin discoloration
- Itching or tingling in the affected limb
- Varicose veins
- Hardening and thickening of the skin

PTS is a chronic condition that occurs after DVT when blood flow is limited. The good news? Early detection and care can make a difference.

If these symptoms sound familiar, speak with your healthcare provider about options for managing PTS and attend our next PEP Talk on Tuesday, Nov. 12 at 7 p.m. where we’ll discuss PTS and other long-term conditions that can occur after a blood clot. Register at the link in bio.

#stoptheclot #bloodclots #vte #pts #postthromboticsyndrome #cted #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

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