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October e-Newsletter | Support World Thrombosis Day 2018

This year, NBCA is celebrating 15 years of service in the clotting disorders community, and our …

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2024 Thrombassador Visoin Seminar 1 (1)

Celebrating the Collective Power of Our Grassroots Volunteers

Did you know that the word thrombus is the medical term for a blood clot? It’s also the inspiration behind…

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Clinical Trial Opportunity for Afib Patients Who Don’t Take an Anticoagulant

If you’re an atrial fibrillation patient who does not take an anticoagulant, you might be interested in a new class…

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Attention, New York Yankees fans! The Yankees ar

Attention, New York Yankees fans!

The Yankees are facing the Los Angeles Dodgers in the World Series, and you have a chance to own a piece of history while also supporting our our charity race team in the New York City Marathon!

A member of our NYC Marathon team, Darren Triller, is auctioning off three New York Yankees baseballs signed by Yankee stars Gerrit Cole, Jasson Domínguez, and Nestor Cortes! All proceeds go toward NBCA’s blood clot awareness and education programs.

More about the players:

- Gerrit Cole is one of the best starting pitchers in major league baseball. He was the number 1 pick in the 2012 draft and has played 12 seasons for the Yankees, Pirates, and Astros. He has 153 wins, 80 losses, an ERA of 3.18 and 2,251 strikeouts. In 2021 he became the second fastest to reach 1,500 strikeouts in major league history. He is a six-time All-star and was the unanimous 2023 American League Cy Young Award winner.

- Nestor Cortes is a Yankee All-Star who has been pitching as a starter and reliever for the team since 2021. His 174 innings pitched in 2024 were the second-most on the team. He holds the franchise record for most consecutive starts, giving up three earned runs or less at home, a staggering 26 starts.

- Jasson Dominguez is nicknamed "El Marciano," Spanish for "The Martian", because of his out-of-this-world talent was not of this world. He debuted for the Yankees at the age of 20 in 2023 and has been compared to Mickey Mantle.

Bidding closes on Sunday, Nov. 3 at 11:45 p.m. Don’t miss this opportunity to grab some memorabilia from an amazing team and support a great cause.

Check it out at the link in bio.

@gerritcole45 @jassondominguez_7 nestorcortes12 @yankees @nycmarathon #stoptheclot #bloodclots #vte #nycmarathon #nyyankees #newyorkyankees #signedbaseballs #charityrace #bloodclotawareness #bloodclotprevention #baseball #nyyankeesbaseball #nyyankeesfan #nyyankees4life #worldseries

"It was February 24 2024, and I had overslept. My

"It was February 24 2024, and I had overslept. My husband had joked the night before, 'Let’s not waste tomorrow staying in bed. I’ve got the day off, let’s make the most of it!' But when I finally glanced at the clock, it was already 10:22. Oh no, I thought, he’s going to call me a lazy mare for sure. I could already hear his teasing voice in my head as I made my way downstairs, expecting a light-hearted jab as soon as I entered the kitchen.

But that moment never came. As soon as I walked in, everything went black.

The next thing I remember was a strange fog, thinking I was still in bed and hearing my husband’s voice, loud and urgent, telling me to wake up. I wanted just five more minutes of sleep, but something felt off. I was drifting, not realizing that I had collapsed in the kitchen. I later learned my eyes were open, but I was unresponsive.

My husband, panicked, called for an ambulance, but when they were told it would be a three-hour wait, he and my son carried me into the car and rushed me to A&E (the emergency department in the United Kingdom.)

I was taken straight into resuscitation. My veins had collapsed, and they couldn’t get any lines in. After a scan, they found the culprit—a pulmonary embolism blocking my lungs and putting a strain on my heart. I was admitted but treatment options were limited because of a brain bleed I’d had back in 2006. Thrombolysis wasn’t an option.

I spent just over a week in the hospital, and when I was finally discharged, they told me I’d need to take apixaban for life. My clots had been unprovoked, with no clear cause. Months later, a VQ scan showed that 50% of my lungs were covered in chronic clots. I’m still waiting for a right heart catheterization, unsure of when—or if—things will improve. Each day is harder, but I’m still here, taking each breath one at a time, hoping for answers."

Read more patient stories at the link in bio.

#stoptheclot #vte #stoptheclotstory #bloodclots #pulpmoanryembolism #pe #bloodclotpatient #unprovokedpe #bloodclotawareness #bloodclotsurvivor

We’re thrilled to announce the top five fundrais

We’re thrilled to announce the top five fundraisers from our 5th Annual Fun Run! They raised an incredible $11,246 to support the National Blood Clot Alliance’s awareness and education programs.

A huge thank you to:

- Suzan Syron
- Tamara Brown
- Lainey Toennies
- Mat Vido
- Britney Mula

As a token of our appreciation, each will receive an NBCA backpack! Your dedication and hard work are making a difference in the fight against blood clots.

Thank you to everyone who participated in the Fun Run. Together, we are stronger!

Join us for our next PEP Talk on November 12! Hav

Join us for our next PEP Talk on November 12!

Have you or a loved one experienced complications from deep vein thrombosis (DVT) or pulmonary embolism (PE)?

In our November PEP Talk, we’ll discuss conditions that can arise from DVT and PE, including post-thrombotic syndrome (PTS), chronic thromboembolic pulmonary hypertension (CTEPH), and chronic thromboembolic disease (CTED).

We’ll explore:

- Symptoms and management strategies
- Treatment options for PTS
- Interventions and innovative medical therapies for CTEPH and CTED
- Ongoing research and clinical trials

Don’t miss this chance to hear from medical experts, and connect with others in the blood clot community who understand the journey.

Register at the link in bio.

#stoptheclot #bloodclots #vte #dvt #deepveinthrombosis #pe #pulmonaryembolism #pts #postthromboticsyndrome #cteph #cted #dvtcomplications #bloodclotsurvivor #bloodclotawareness

"My gynecologist put me on a contraceptive ring an

"My gynecologist put me on a contraceptive ring and I wasn't even on it a full 30 days before it almost killed me.

On May 17, 2024, I woke up, couldn't breathe, and could barely take two steps without almost passing out!

I went to the ER around 9 a.m., I explained my symptoms, and they made me sit in the waiting area until almost 6 p.m. Struggling to breathe, I held on until they called my name.

They drew blood from me, and about an hour later she returned with the news of a positive D-dimer test. I didn't know what that was, so I asked her to elaborate, and she said I had blood clots somewhere in my body, and she was sending me up for a CT scan.

When my scans came back, a different doctor came in and gave me the devastating news that I had multiple blood clots in my lungs. I asked about my options, and he said I had two: go home with blood thinners, or if I didn't feel safe going home, then I could stay there.

I told him I wasn't going home, and asked how is that even an option if I had multiple blood clots in my lungs and I could barely breathe.

After advocating for myself, they finally decided to keep me. In the middle of the night, the doctors began drawing blood every four hours and doing ultrasounds to see if there were any clots in my legs or pelvic area. I didn't have any other clots besides those in my lungs, which was a blessing, and after spending four days in the hospital, I was able to go home with blood thinners and adapt to my new life.

This was the scariest thing I have ever been through, and not a day goes by that I don't thank God because it could have been me! Though I survived the clot, I'm almost six months in, and I still have complications from it. My doctors told me it would take time to fully heal, but more importantly, I have to take it easy and never miss a dose of my medication.

I tested negative for clotting disorders. PE came from the use of birth control. I'm glad I listened to my body and went into that hospital. If I hadn't, I wouldn't be here, and I’m grateful!"

Read more patient stories at the link in bio.

#stoptheclot

"Officer Lamras Hughes was a remarkable man and hi

"Officer Lamras Hughes was a remarkable man and his life journey is one that should be admired. I first met Lamars in 1995 when I walked into Boston Market to visit a friend who worked there. Officer Hughes was the only patron there at that time. We talked for a couple of minutes and as he left he said, 'I’m sure I’ll see you around town.' Who knew that just three short years later we would be co-workers!

Over the years working with Lamars, I learned so much about his life. He grew up in Boston. As a teenager in the 70’s he was a part of the desegregation of the Boston schools, something that was not easy for him but thankfully sports assisted with being accepted. He used to tell me that playing on teams made skin color irrelevant because the uniforms were the same color.

Lamars always knew he wanted to be a police officer. He loved helping people. So in 1993, he took the statewide civil service exam. According to Lamars, Wellesley needed a Black officer, and so in 1994 he became Wellesley’s first Black police officer.

Lamars was also more than a police officer. He was a big family man. In 2006, Lamars married Angeila, a union that resulted in a blended family of five children and five grandchildren.

In early 2023, Officer Hughes was involved in a car accident while on duty and was out of work for an extended period of time. We talked every few weeks about work and family life.

On November 13, 2023, my cell phone rang. As I looked at the screen I saw it was Lamars. I answered in our traditional banter. 'New phone. Who’s this?'

The voice on the other side was not Lamars but rather his wife Angeila. She was at the hospital. My friend Lamars, a 29-year veteran of the Wellesley Police, had passed away.

Officer Hughes died from a pulmonary embolism, resulting from his lack of mobility after the car accident. Something we couldn’t have seen coming.

I decided to run and raise money for this cause in honor of fallen Officer Lamars Hughes. I’ll be wearing green shorts on race day as green was his favorite color, probably because he was a huge Boston Celtics fan."

Support Timothy’s marathon fundraiser at the link in bio.

"At the end of June, I began experiencing symptoms

"At the end of June, I began experiencing symptoms that I initially attributed to a chest cold. Since I could still carry out my regular activities, like exercising and working, I didn't pay much attention.

However, after about a week, my condition worsened, leading to severe pain when I inhaled and difficulty breathing. The persistent chest pain radiated to my back, making it hard to stand. I realized something was seriously wrong.

An elevated D-dimer level and a chest CT scan revealed a pulmonary embolism along with a pleural effusion and left-sided lung infarction. As a healthy 27-year-old with no significant medical history aside from varicose veins, this diagnosis was shocking.

Back in March, I had experienced pain related to my varicose veins, and ultrasounds confirmed blood pooling in them at that time. Doctors believe this pooling contributed to my pulmonary embolism.

I have started a treatment regimen with blood thinners and am awaiting results from additional tests for possible clotting disorders. I also have a procedure scheduled to repair my varicose veins.

While I have physically recovered, the experience has taken a toll on my mental health, which I am working to address each day.

NBCA resources have been extremely helpful. I feel much more informed and educated on signs and symptoms and reading other stories similar to mine has helped to provide me comfort.

It has been a long journey, but I am so thankful for all of the support I have had along the way."

Read more stories at the link in bio.

#stoptheclot #bloodclots #stoptheclotstory #vte #patientstory #varicoseveins #bloodclotsurvivor #bloodclotpatient #bloodclotprevention #bloodclotawareness #pe #pulmonaryembolism

🎉 Thank You for Making Our Fun Run a Huge Succe

🎉 Thank You for Making Our Fun Run a Huge Success! 🎉

Over the weekend, we hosted our 5th Annual Fun Run in honor of World Thrombosis Day, and we're thrilled to share that we had our largest turnout EVER—nearly 260 participants from around the world! Together, we exceeded our $25,000 goal and raised nearly $30,000 to support our blood clot awareness and education programs!

Your energy, generosity, and passion made this event a huge success. We couldn't have done it without you! 🏅

Let’s continue this momentum and keep spreading the word about blood clots!

#stoptheclot #funrun #vte #bloodclots #wtd24 #worldthrormbosisday #thrombosis #charityrace #fitness #fundraising #bloodclotsurvivor #bloodclotawareness #bloodclotprevention

Last week, we had the honor of hosting Dr. Elliott

Last week, we had the honor of hosting Dr. Elliott Haut for an informative PEP Talk on preventing hospital-associated blood clots. Blood clots can be a serious risk during hospital stays, but with the right prevention measures, they can be reduced or even avoided.

Dr. Haut shared prevention strategies, the first being an initial blood clot risk assessment that a healthcare provider should complete when the patient enters the hospital.

Thank you to everyone who tuned in for this PEP Talk! Together, we can save lives by raising awareness and taking action to prevent blood clots.

If you missed the live event, you can watch the full recording along with our other PEP Talks at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #dvt #pe #surgery #HAVTE #bloodthinners #bloodclotawareness #bloodcloteducation

For blood clot survivors, understanding your healt

For blood clot survivors, understanding your health is key to managing your condition and preventing future clots. Health literacy means knowing how to navigate medical information, ask the right questions, and make informed decisions about your care.

October is Health Literacy Month, and we encourage you to take charge of your health by learning more about blood clots, treatment options, and how to stay on top of your medication. The more you know, the more empowered you are to manage your recovery.

At the link in bio, you'll find useful links to learn more about blood clots.

#stoptheclot #bloodclots #healthliteracymonth #healthliteracy #bloodclotterms #bloodclottingdisorder #VTE #bloodclotsurvivor #bloodclotprevention #bloodclotpatient #bloodclotawareness

If you’re an atrial fibrillation patient who doe

If you’re an atrial fibrillation patient who does not take an anticoagulant, you might be interested in a new class of anticoagulants currently being evaluated in a clinical trial.

Afib puts patients at an increased risk for stroke because blood may not be properly pumped out of the heart, which may cause it to pool and form a clot. This clot can then travel to the brain and block the flow of blood to part of the brain which can result in a stroke.

The LILAC - TIMI 76 trial is testing a monthly medication of a new type of anticoagulants called Factor XI (Factor Eleven) inhibitors. Factor XI inhibitors are expected to cause significantly less bleeding than currently available blood thinners while still protecting from harmful blood clots.

- This clinical trial is recruiting afib patients who are age 65 years or over and are not appropriate for currently available blood thinners (as determined by your doctor).
- If you have afib but have never taken a blood thinner, or stopped taking a blood thinner more than 60 days ago, you may be eligible to participate.
- An initial screening period with tests, assessments, and questionnaires will be done to determine if this trial is right for you. The trial is expected to last for about 18 months (1.5 years) for each participant.

To learn more and find information to discuss with your doctor, visit the link in bio.

#stoptheclot #bloodclots #afib #atrialfibrillation #anticoagulants #factorxi #bloodthinner #anticlottingmedication #clinicaltrial #newmedication #bleeding #lilactrial

Happy World Thrombosis Day! On this significant d

Happy World Thrombosis Day!

On this significant day, we’re are thrilled to announce the second season of our award-winning podcast, Taking a Breath: a Stop the Clot Podcast, created to spread awareness and share patient stories with input from the medical community.

It’s fitting that the first episode of the new season features Todd Robertson, co-host of Taking a Breath, NBCA patient liaison, board member, and 2021 World Thrombosis Day Ambassador of the Year.

In this episode, Todd goes into detail about his most recent DVT and how he finds the strength to move forward. Listen at the link in bio or wherever you get your podcasts.

#stoptheclot #bloodclots #vte #wtd #worldthrombosisday #bloodclotawareness #thrombosis #dvt #pe #bloodcloteducation #bloodclotprevention #bloodclotpodcast #vtepodcast

🌍No matter where in the world you are, join us

🌍No matter where in the world you are, join us in celebrating World Thrombosis Day today (October 13)! This global day of awareness reminds us of the importance of preventing and treating blood clots. 🩸

Did you know, 900,000 Americans are affected by blood clots each year? Help save lives and contribute to NBCA’s mission by signing up for our 2024 virtual 🏃‍♂️Race to Stop the Clot Fun Run in recognition of World Thrombosis Day! Walk, run, or roll a 10K, 5K, or 1 mile distance any time today or tomorrow. Let's make every step count together.

REGISTER: bit.ly/NBCAFUNRUN *Link in Bio*

📸 Share pictures of you, your family, your pets, or whoever your "team" is. We want to see you in action! Be sure to tag us @stoptheclot.

#stoptheclot #worldthrombosisday #bloodclots #funrun #charityrace #virtualrace #bloodclotawareness #bloodcloteducation #bloodclotevent #bloodclotprevention

We just hit a milestone: 8,000 members in our Face

We just hit a milestone: 8,000 members in our Facebook support group. While it’s unfortunate that this support group needs to exist, we’re deeply grateful to everyone who has helped to make it a safe space for blood clot patients and caregivers to learn from each other, offer support, and celebrate breakthroughs.

All are welcome! Join at the link in bio.

#stoptheclot #bloodclots #bloodclotsupportgroup #facebooksupportgroup #bloodclotrecovery #bloodclotpatient #bloodclotsurvivor #bloodclotawareness #pe #pulmonaryembolism #dvt #deepveinthrombosis

Did you know many women on blood thinners experien

Did you know many women on blood thinners experience heavy periods? This can be a challenging side effect for those managing blood clots.

Today, on Period Action Day (October 12), we’re shining a light on the fact that heavy menstrual bleeding is more than an inconvenience—it's a serious issue that deserves open conversation and understanding.

Let’s end the stigma around menstrual health and advocate for better care. If you’re dealing with heavy periods while on anticoagulants, there are ways to manage your symptoms, so don’t hesitate to reach out to your healthcare provider. You’re not alone, your health matters, and every woman should feel supported.

Watch this Mini PEP Talk on menstrual bleeding and anticoagulation with Dr. Bethany Samuelson Bannow at the link in bio.

#stoptheclot #bloodclots #periodactionday #menstrualbleeding #heavyperiods #anticoagulation #anticoagulants #bloodthinners #bloodclotrecovery #bloodclotsurvivor

For women managing blood clots, taking an anticoag

For women managing blood clots, taking an anticoagulant may lead to particularly heavy periods. This side effect can be overwhelming and may even cause some to stop their medication, putting them at risk for dangerous blood clots.

Today, on Period Action Day (October 12,) we’re highlighting that we need to talk openly about the challenges of heavy menstrual bleeding and encourage women to seek support from their healthcare providers. Don’t let heavy periods stand in the way of your health. Let’s end the stigma and ensure no one feels alone in managing these side effects.

Watch this Mini PEP Talk on menstrual bleeding and anticoagulation with Dr. Bethany Samuelson Bannow at the link in bio.

#stoptheclot #bloodclots #periodactionday #menstrualbleeding #heavyperiods #anticoagulation #anticoagulants #bloodthinners #bloodclotrecovery #bloodclotsurvivor

This October, as we raise awareness for breast can

This October, as we raise awareness for breast cancer, it's important to remember that people with cancer and undergoing cancer treatments are at an increased risk for blood clots.

Chemotherapies and hormonal therapies, central venous catheters, such as PICC lines, surgery and hospitalization, and even the cancer itself can elevate the risk of developing a blood clots, including deep vein thrombosis (DVT) and pulmonary embolism (PE). That's why it’s crucial to be informed and to discuss blood clot prevention with your healthcare team.

Megan-Claire Chase, breast cancer program director at SHARE Cancer Support, emphasizes the critical importance of learning about the risks for blood clots associated with cancer, as well as the signs and symptoms.

“Blood clots can affect anyone with a cancer diagnosis and does not discriminate by type of cancer. This vital information is often overlooked during cancer treatments, highlighting an urgent need for increased awareness,” Chase said.

“That is why I am incredibly proud of my role in establishing our partnership with the National Blood Clot Alliance. Together, we are dedicated to empowering patients and caregivers with the essential knowledge they need to navigate their journeys. Knowledge is power, and understanding these risks can truly be lifesaving."

If you or a loved one is undergoing cancer treatment, be sure to know the signs of a blood clot:

- Swelling, usually in one leg (or arm)
- Leg pain or tenderness often described as a cramp or charley horse
- Reddish or bluish skin discoloration
- Leg (or arm) warm to touch
- Sudden shortness of breath
- Chest pain that’s sharp and stabbing; may get worse with deep breath
- Rapid heart rate
- Unexplained cough, sometimes with bloody mucus

Learn more about cancer-associated blood clots and how to protect yourself or a loved one at the link in bio.

#stoptheclot #bloodclots #vte #breastcancerawarenessmonth #bloodclotsandcancer #breastcancer #cancerassociatedbloodclots #CAVTE #bloodclotawareness @sharecancersupport

🩺 National Primary Care Week: Oct. 6-12 🩺 A

🩺 National Primary Care Week: Oct. 6-12 🩺

A primary care provider can be a physician, physician’s assistant, or nurse practitioner who provides continuing care for various medical conditions, including blood clots. PCPs also provide referrals to specialists.

Your PCP may be the first to suspect a blood clot and can refer you to a specialist or to the emergency room for further imaging to determine if there is a clot.

Make sure to keep your PCP informed about what is happening when you visit other providers, provide them with copies of test results, and let them know the medications that you are taking.

Learn more about a PCP’s role in blood clot care by downloading our New Patient Resource Guide, designed to help blood clot patients navigate life post-diagnosis. Find it at the link in bio!

#stoptheclot #bloodclots #nationalprimarycareweek #pcpweek #primarycareprovider #primarycarephysician #bloodclotprevention #bloodclotrecovery #bloodclotawareness

"My experience was in the summer of 2021. I woke o

"My experience was in the summer of 2021. I woke one Sunday morning feeling shortness of breath, and I continued my day with increasing difficulty breathing.

On Monday, I went to an urgent care clinic. They did not do a CT scan, they assumed because I was overweight and out of breath that it was asthma. I was sent home with antibiotics and an inhaler, but neither helped. I called the clinic and they put me on hold forever and eventually said they would call me back, but they didn't!

I called my primary care physician and she wanted me to come into her office. I had to get a ride because I was feeling lightheaded and didn't want to attempt to drive. My friend noticed my breathing problem and she called a paramedic friend. He spoke with me and immediately called an ambulance.

At the hospital, I waited hours upon hours before being seen. I could tell I was getting worse and insisted I get help.

A CT scan revealed I had massive blood clots in both lungs and possible damage to my heart. The doctor asked how I survived this! He told me that if I had gone to sleep that night, it possibly would have been my last.

I'm always on alert for possible future clots and I’m anxious about falling since I need to be on blood thinners for life. Why this happened, no one can tell me.

I appreciate NBCA for putting faces with experiences similar to mine. It’s comforting to know I can be a survivor and have a life after this.

Thank you for letting me share, it's my life story now!"

Read more stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclotstory #pulmonaryembolism #pesurvivor #bloodclotsurvivor #gaslit #misdiagnosed #bloodclotawareness #bloodcloteducation

Today marks the official kick-off of the 2024 Race

Today marks the official kick-off of the 2024 Race to Stop the Clot Fun Run in honor of World Thrombosis Day (Oct. 13)! Good luck to all our amazing participants who are hitting the pavement to raise blood clot awareness this weekend.

If you haven't signed up yet, it's NOT TOO LATE! Run, walk, or roll a 10K, 5K, or 1 mile distance any time before Monday, Oct. 14 at 11:59 p.m. Bring the whole family along to get everyone moving — the more, the merrier!

Did you know 900,000 Americans are affected by blood clots each year? Help save lives and contribute to NBCA’s mission at the link in bio.

Let's make every step count together. Share pictures of you, your family, your pets, or whoever your "team" is. We want to see you in action! Be sure to tag us @stoptheclot.

#stoptheclot #worldthrombosisday #bloodclots #funrun #charityrace #virtualrace #bloodclotawareness #bloodcloteducation #bloodclotevent #bloodclotprevention

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