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NBCA Video Series – Our Genes Our Stories

Stop The Clot Forum – October 2008 – Minneapolis

Learn how the Genetic Information Non discrimination Act protects you and your family. Now available on iTunes, click here to download to your iPhone or iPod.

Our Genes, Our Stories – Matt Bower – Genetic Testing Part 1 of 6

Learn when to test. Thrombophilia and the practice of genetics, Ancient history-recognition of X-linked inheritance, Non-directiveness adopted as a guiding philosophy in response to eugenics, Until 1970s primarily practiced by basic scientists, New technologies, Carrier Testing, Prenatal Diagnosis, Predictive Testing (Slide 17)

Visit NBCA’s You Tube Channel. Click here.

The video production for these programs was done by REM Video & Event Company, St. Louis Park, Minnesota.

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Advancing blood clot awareness, prevention, diagnosis & treatments to #stoptheclot. Submit your story @ link below ⬇️ Our podcast: Taking a Breath 🎙️

🫶 Every effort to prevent a blood clot is an ac

🫶 Every effort to prevent a blood clot is an act of public health.

Today, on #PublicHealthThankYouDay, we honor our partners in health — the clinicians, researchers, advocates, and community partners — who help NBCA empower patients, advance awareness, and save lives.

Public health workers are the link between science, healthcare systems, and everyday people. They translate knowledge into action so fewer people develop clots, more individuals receive timely diagnosis and treatment, and more families are spared preventable loss.

Join us in saying thank you to public health workers for their dedication to prevention, education, and care that keeps our communities safe.

Tag a public health hero in the comments to help us celebrate their impact.

#StopTheClot #PHTYD #BloodClotAwareness #PublicHealthHeroes

“On December 11, 2024, I went to the emergency r

“On December 11, 2024, I went to the emergency room because my entire right arm was swollen. My father told me not to go since I wasn’t in pain and already had a doctor’s appointment scheduled for the next day, but something told me to get it checked out. I honestly thought it was just a pinched nerve — nothing serious.

When the ER doctor came in and told me I was in a life-or-death situation after finding a blood clot, or deep vein thrombosis (DVT) in my arm, my whole world stopped. They prepared to transfer me for emergency surgery but later decided instead to start me on blood thinners and send me home. I didn’t realize at the time that my life was still in danger.

In the early morning hours of December 12, around 3 a.m., I woke up gasping for air. I couldn’t breathe. My heart was pounding out of my chest. My consciousness began to fade, and my whole body was tingling and numb. When I touched my left arm, I couldn’t feel my own touch — the sensation was completely gone.

I was rushed to the hospital and woke up the next day, Friday, December 13, after 12 hours in the ER. The doctors told me I was lucky to be alive — I had suffered a pulmonary embolism.

After my PE, I struggled to understand how this could have happened to me. It was labeled as unprovoked, which only made me more determined to find answers. For months, I shared my story, changed doctors, and kept searching.

My first hematologist told me there was nothing they could do to figure out why I had a blood clot and to seek psychological help.

About nine months later, after switching hematologists and hospitals, I finally learned the cause: venous thoracic outlet syndrome (VTOS). My right first rib was severely compressing my subclavian vein — the same area where my clot had formed back in December.

On October 22, 2025, I underwent surgery to remove my first rib. Without it, I faced a high risk of another DVT or pulmonary embolism.

I believe God saved my life for a reason, and I’m grateful every day to still be here. My message to others: never stop advocating for yourself — your life may depend on it.”

More stories: Link in bio.

Game day energy. Player passion. A cause that save

Game day energy. Player passion. A cause that saves lives. 👟🏈

Every November and December, @NFL players lace up to honor the causes that matter most to them. This year, one NFL player is stepping onto the field with a powerful tribute in memory of a teammate gone too soon. We have a powerful My Cause My Cleats partnership announcement dropping this week. Any guesses? Comment below!

#StopTheClot #MyCauseMyCleats #NFL #BloodClotAwareness @ESPN

💙⭐ It’s game day, @dallascowboys fans! ⭐💙PE survivor @charly.barby of the @dccheerleaders

Today, Dallas Cowboys Cheerleader and PE survivor Charly Barby takes the field in her custom My Cause My Boots supporting blood clot awareness.

We’re grateful to Charly for using this moment to shine a light on a cause that saves lives, not only on the field but also on the Netflix series “America’s Sweethearts.”

🎙️ Hear her story on our Taking a Breath podcast: Link in bio.

Keep an eye out for those boots today! 👢✨

#StopTheClot #MyCauseMyBoots #NFL #BloodClotAwareness

Last month on our Taking a Breath podcast, blood c

Last month on our Taking a Breath podcast, blood clot survivor Elizabeth Simms opened up about the moment that changed everything.

While pregnant, Elizbeth experienced a life-threatening saddle pulmonary embolism and required an emergency computer-assisted vacuum thrombectomy (CAVT) — a procedure that saved both her life and her unborn baby’s life.

Her story continues to make an impact.

@todayshow just featured Elizabeth’s experience, bringing more attention to blood clot risks in pregnancy and the power of timely diagnosis and treatment.

💛 Elizabeth, thank you for bravely sharing your story and helping protect countless others.

🎧 Listen to her podcast episode: Link in bio.

📖 Read the Today feature: Link in bio.

#StopTheClot #TakingABreath #StopTheClotPodcast #BloodClotPodcast #TodayShow

💙⭐ Big news, @dallascowboys fans! ⭐💙 Pu

💙⭐ Big news, @dallascowboys fans! ⭐💙

Pulmonary embolism survivor @charly.barby of @dccheerleaders has chosen the National Blood Clot Alliance for her My Cause My Boots campaign!

This Sunday, she’ll take the field in custom NBCA boots to raise awareness about blood clots , a cause that’s deeply personal to her.

Charly has been an incredible voice for our community. She even joined us on our Taking a Breath podcast (Season 2, Episode 10) to share her story. 🎧 Listen to Charly’s episode: Link in bio!

Thank you, Charly, for bringing heart, sparkle, and lifesaving awareness to the NFL stage.

Make sure to cheer her on and catch her boots on the field this Sunday! ✨👢

#StopTheClot #MyCauseMyBoots #NFL #BloodClotAwareness @nfl

A blood clot diagnosis can leave you with more que

A blood clot diagnosis can leave you with more questions than answers. What’s normal? What’s not? How long will recovery take? And why does it feel like no one else understands what you’re going through?

You don’t have to navigate this by yourself.

Join us on Tuesday, December 9 at 7 p.m. ET for our quarterly PEP Talk for people who are newly diagnosed or still finding their way forward after a clot.

Diane Wirth, MSN, ANP-BC, CACP, a member of NBCA’s Medical & Scientific Advisory Board, will share practical guidance on early recovery, day-to-day management, and how to feel more in control of your health.

We’ll discuss:

✔️ What to expect in the first weeks to months after diagnosis
✔️ Simple habits that support healing and reduce risk
✔️ How to communicate with your care team and get the answers you need

Whether you’re healing yourself or helping someone you love, this session can bring clarity, validation, and a sense of community at a time when it’s needed most.

👉 Register: Link in bio.

#StopTheClot #BloodClots #VTE #NewDiagnosis #BloodClotAwareness

“After a dilation and curettage (D&C), my doctor

“After a dilation and curettage (D&C), my doctor accidentally tore my cervix. I was given medication to stop the bleeding, but I passed out in the hospital from blood loss five days later. My doctor gave me tranexamic acid (TXA) to control the hemorrhaging.

Later that day, I started feeling a burning sensation in my chest. I told the hospital staff, and they performed an EKG, but said everything looked normal. Over the next few days, I continued having episodes of rapid heartbeat (tachycardia) and heaviness in my chest. When I returned to the hospital, they again said everything was fine.

For the next month, my symptoms continued—chest pressure, shoulder pain, and a racing heart—but each time I went back, I was told it was bronchitis, anxiety, or tendonitis. My blood pressure and heart rate remained high, yet my concerns were dismissed.

After another surgery two months later, I woke up with sharp pain in my right ribs and tingling in my arm. I was told it was just post-surgical discomfort. A week later, I developed fever and chest pain, went back to the hospital, and was finally diagnosed with multiple pulmonary emboli (PEs) — blood clots in both lungs.

I spent six months on blood thinners. Mentally, I’m not doing well. I’m afraid of the future, and am still processing how many times my symptoms were overlooked. I was repeatedly told it was just anxiety, but I knew something was wrong.”

If you’ve experienced mental health struggles after a blood clot, you’re not alone. Resources are available at the link in bio.

#StopTheClot #StopTheClotStory #PulmonaryEmbolism #Misdiagnosed #BloodClotAwareness

Fifteen years after surviving her first pulmonary

Fifteen years after surviving her first pulmonary embolism, NBCA Thrombassador Arielle Dance marked her clotiversary with movement, mindfulness, and meaning. ✨

Arielle and her wife recently gathered female friends and loved ones for a dance workout, meditation, and sound bath at @groovetheoryfitness in Maplewood, NJ. They generously raised funds for the National Blood Clot Alliance and honored every “walking miracle” in the room.

Out of the 20 attendees, five were blood clot survivors — including two who had suffered more than one blood clot.

“The event was healing for everyone and was a strong reminder for all the women to take better care of their bodies and spirits,” Arielle said.

Thank you, Arielle, for using your strength and creativity to raise blood clot awareness and inspire others to keep moving, breathing, and honoring our journeys.

Read Arielle’s story and learn how to plan your own awareness event at the link in bio.

#StopTheClot #Clotiversary #BloodClotSurvivor #BloodClotAwareness #BloodClotAwarenessEvent

🎉 Big news for families affected by hereditary

🎉 Big news for families affected by hereditary antithrombin deficiency (hATd).

Announced yesterday, the FDA approved a major update to THROMBATE III® — making it the only antithrombin concentrate approved for both adult and children living with hATd.

hATd is a rare, often undiagnosed inherited condition that greatly increases the risk of dangerous blood clots, including in children and teens. Last year, NBCA hosted a webinar with hematologist Dr. George Rodgers, who shared his research and emphasized the importance of recognizing and managing hATd early in life.

This expanded indication means:

✔ More clarity for families navigating this rare disorder
✔ More confidence for clinicians treating pediatric patients
✔ More options during high-risk moments like surgery, trauma, or childbirth

NBCA remains committed to supporting families impacted by inherited clotting conditions with trusted information and community.

At the link in bio, watch the webinar recording and learn more about this approval.

@grifols_official

#StopTheClot #THROMBATEIII #hATd #AntithrombinDeficiency #Grifols #BloodClotAwareness #GeneticClottingDisorder #RareDisease #Thrombophilia #ATIII

November is National Family Caregiver Month, a tim

November is National Family Caregiver Month, a time to honor the incredible people who provide care and comfort to loved ones facing health challenges, including those navigating life after a blood clot.

Caregivers are the steady link that keeps healing and hope connected. They:

✨ Advocate for timely diagnosis and care

✨ Offer comfort during recovery

✨ Help loved ones manage medications, treatment, and prevention plans, and so much more!

This year’s theme, Plug In To Care, highlights the power of connection. Caregivers thrive when they can easily “plug in” to trusted tools, networks, and educational resources that make the caregiving journey less overwhelming and more supported.

If you’re a caregiver or know someone who is, plug into resources (link in bio) that can help you feel supported every step of the way.

#StopTheClot #NationalFamilyCaregiversMonth #FamilyCaregivers #BloodClotRecovery #BloodClotSurvivor #BloodClotPatient

📅 Save the date — #GivingTuesday is December

📅 Save the date — #GivingTuesday is December 2!

Every second counts when it comes to saving lives from blood clots. In the time it takes to read this post, someone in the U.S. could be hospitalized — or even die — from a preventable blood clot. But together, we can change that.

This Giving Tuesday, join the National Blood Clot Alliance in taking action. Your support powers lifesaving education, awareness, and research that help people recognize the signs of blood clots before it’s too late.

🔗 Let’s make every second count and every gift matter. Download our Giving Tuesday toolkit at the link in bio.

🔗 Want to take your support even further? Create a Facebook fundraiser for NBCA this Giving Tuesday. More info at the link in bio.

#StopTheClot #GivingTuesday2025 #GlobalGenerosity #BloodClotAwareness

“In May of this year, I took a short flight, onl

“In May of this year, I took a short flight, only about two and a half hours one way, and soon after, I noticed a cramping sensation in my right calf. I assumed it was just soreness or dehydration, so I ignored it for a couple of days. When the pain didn’t go away, I contacted my doctor (thanks to my mom’s advice — she kept saying something didn’t seem right). They instructed me to go to the hospital to get checked out.

Everyone told me it was unlikely to be a blood clot because of my age, but they ran tests anyway. It turned out I had a confirmed DVT in my right calf. Because of some existing medical concerns, they didn’t start me on blood thinners right away and instead scheduled weekly ultrasounds to monitor it. At my second appointment a week later, they found that I actually had three separate clots in my calf instead of one.

I was told to go to the ER if I experienced chest pain or shortness of breath, but at the time, I felt fine. The next day, while walking my dog, I suddenly became short of breath and noticed my heart rate was unusually high for the amount of effort — even though it was a walk I did multiple times a day. I called my doctor, and they told me to go straight to the ER. They even called ahead out of concern for a possible pulmonary embolism.

My mom and I waited about 12 hours in the ER before I was finally taken back. I was just about to leave when they called me in. A CT scan showed numerous clots in both lungs — the doctor couldn’t give me a number but said they were extensive. I was admitted for the weekend, started on a heparin drip, and later transitioned to twice-daily blood thinners.

All of this was caused by my birth control use. My symptoms were minor and almost overlooked because of my age, and I’ve never been more scared. Always pay attention to changes in your body and advocate for yourself, no matter what anyone says.

The NBCA has been a godsend for me. I have learned so much and the website along with others sharing their stories and experiences have provided me so much knowledge and comfort.”

More stories: Link in bio.

#StopTheClot #BirthControl #Travel #BloodClotAwareness #PE #DVT

📷 A remarkable moment featuring two of our extr

📷 A remarkable moment featuring two of our extraordinary NBCA volunteers is up for a national photo contest—and we’d love your vote!

Our submission features Arshell Brooks Harris, who is NBCA’s Board Secretary, and her husband Andre Harris. The photo was taken on Capitol Hill, where the B.L.A.C.K. (Black Lives Advocating for Clot Knowledge) Church Bus Tour officially launched after meetings with Congressional staffers about the urgent need for blood clot awareness and education funding.

From there, Arshell and Andre traveled thousands of miles across the South, visiting churches to deliver blood clot education, share life-saving resources, and listen to the experiences of underserved communities. Their dedication and compassion helped bring NBCA’s mission directly to people who need it most. The photo serves as a powerful reminder of how dedicated volunteers drive this mission forward.

🙌 Help us lift up this work and raise awareness nationwide. Cast your vote: Link in bio!

Thank you! Winners will be announced December 10.

@shelly_shell69 @nonprofitsinsurance

#StopTheClot #NonprofitInsuranceAlliance #PhotoContest #NonprofitImpact

🩺 Medicare Open Enrollment is here — October

🩺 Medicare Open Enrollment is here — October 15 to December 7!

If you take blood thinners or other long-term medications, this is the time to review your plan and make sure your prescriptions and providers will still be covered next year.

✅ Check that your anticoagulant (blood thinner) is on your plan’s formulary.

✅ Compare pharmacy costs across plans.

✅ Review any changes to your preferred doctors or specialists.

Even small changes in coverage can make a big difference in your care and costs.

👉 Download this helpful new infographic for changes to the 2026 Medicare Part D program: Link in bio.

#MedicareOpenEnrollment #Medicare2025 #StopTheClot #VTEAwareness #Anticoagulation #BloodClots

🌍 Today is World Diabetes Day. Did you know th

🌍 Today is World Diabetes Day.

Did you know that people with diabetes have a higher risk for blood clots? Both Type 1 and Type 2 diabetes can create conditions that make clots more likely, but awareness and prevention can make a lifesaving difference.

👉 How diabetes increases clot risk:

• High blood sugar can damage blood vessels and increase inflammation.

• Obesity and low activity levels raise the risk further.

• Related conditions like heart disease, stroke, and high blood pressure also contribute.

• Circulatory issues, such as peripheral artery disease, make clots more likely, especially in the legs.

👉 What you can do:

✅ Stay active and manage your blood sugar.

✅ Know the warning signs — leg pain or swelling, redness, chest pain, or sudden shortness of breath.

✅ Talk to your healthcare provider about your personal risk.

🩸 Take a moment to assess your risk: Link in bio.

Let’s raise awareness this #WorldDiabetesDay — share this post to help others understand the connection between diabetes and blood clots.

#StopTheClot #WorldDiabetesDay #WDD2025 #Diabetes #Type1Diabetes #Type2Diabetes

🎉 Exciting new research offers hope for safer b

🎉 Exciting new research offers hope for safer blood clot prevention after knee replacement surgery.

A team of researchers led by NBCA Medical and Scientific Advisory Board member Dr. Jeffrey Weitz of @McMasterU tested two new medicines that block a clotting protein called factor XI. They found that one of them prevented blood clots better than today’s standard treatments after knee surgery, without increasing bleeding complications.

Dr. Weitz presented these findings last week at the @american_heart's Scientific Sessions 2025 in New Orleans.

This research could pave the way for a new type of blood thinner that prevents dangerous clots while reducing bleeding risks for patients after surgery.

Learn more: Link in bio.

Facing knee replacement surgery? Read NBCA’s guide to blood clot prevention: Link in bio.

#StopTheClot #BloodClotResearch #FactorIX #AnticoagulantResearch #KneeReplacementSurgery

“It was a couple of days after traveling when I

“It was a couple of days after traveling when I first noticed something wasn’t right. I had switched birth control pills within the last several months. I was at a conference, mid-presentation, when I realized that I couldn’t quite get through full sentences without pausing for breath. I told myself it was just nerves. Even at the gym that week, I felt more fatigued than usual — nothing alarming, just off.

When I got home, I noticed it again walking up stairs, and then during a mountain-bike ride, it became undeniable. I was short of breath riding from the parking lot to the trailhead, and my heart rate had jumped to 130 — much higher than normal for that effort. I sat down, felt a dull ache in my calf that I’d ignored earlier in the week, and suddenly it all clicked. I likely had a DVT and pulmonary embolism.

Even then, I hesitated to go to the hospital — it didn’t feel that bad, and I worried I’d be embarrassed if it was nothing. It wasn’t nothing. I was admitted and underwent a thrombectomy for a significant pulmonary embolism.

Looking back, I realize how easily this could have been missed — especially in athletes. My resting heart rate was only in the 90s, higher than normal for me but not technically tachycardic, and I never had chest pain. That’s what makes it so unsettling: the symptoms can be incredibly mild.

In a recent Stop the Clot video, @TatyanaMcFaddenUSA talked about how hard it was to return to activity — and I really relate to that. I underestimated how difficult it would be to get back to endurance exercise. I’m used to being in shape, and even though I didn’t take much time off, it took me nearly a year to get back to where I was before it happened. Even now, I still have to fight the panic that comes with shortness of breath — especially during mountain-bike races. I know it’s probably not another PE, but that fear still lives in my body.

It’s normal to feel anxious and uncertain after a clot. I got better with time—and therapy helped most.”

Read more stories on our website. Link in bio.

Thank you to everyone who joined Tuesday night’s

Thank you to everyone who joined Tuesday night’s PEP Talk on thrombophilia testing on blood thinners with Dr. Dana Angelini of the @ClevelandClinic.

In this clip, Dr. Angelini explains that about 50% of the time, thrombophilia testing does not result in a definitive answer as to why a blood clot occurred.

🎙️ Watch the full recording at the link in bio to learn more.

Join us for our next PEP Talk on Tuesday, Dec. 9 at 7 p.m. on navigating a new blood clot diagnosis. 🔗 Register at the link in bio.

#StopTheClot #PEPTalk #ThrombophiliaTesting #BloodClots #BloodClottingDisorderTesting

Today is Genetic Counselor Appreciation Day! Gene

Today is Genetic Counselor Appreciation Day!

Genetic counselors play an important role in helping patients and families understand inherited clotting risks, known as thrombophilia.

They provide compassionate guidance, helping patients:

💬 Understand the role of genetics in blood clots
🧭 Decide whether testing is the right choice
📄 Interpret complex test results
💞 Communicate important information with family members

We’re very thankful for the genetic counselors who empower patients with knowledge, support, and clarity, and who help make personalized care possible for those at risk of blood clots.

🎥 NBCA’s latest PEP Talk covers this very topic! Watch the recording and learn more about genetic testing for blood clotting disorders: Link in bio.

Have you worked with a genetic counselor? Tell us about it in the comments!

#StopTheClot #GeneticCounselorAppreciationDay #GeneticCounseling #Thrombophilia #BloodClottingDisorderTesting

@nsgcounselors

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