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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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Thrombate FDA approval

FDA Expands Approval of THROMBATE III® to Include Children With Hereditary Antithrombin Deficiency

Grifols announced yesterday that the U.S. Food and Drug Administration (FDA) has expanded approval of THROMBATE III® to include children…

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Charitable Giving is Changing in 2026 What Every Donor Should Know

Charitable Giving Is Changing in 2026: What Every Donor Should Know

Starting in 2026, new federal tax rules will affect how charitable giving is treated — and when you choose to…

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

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

💡 A Smarter Way to Give This Year-End As you p

💡 A Smarter Way to Give This Year-End

As you plan your charitable giving for the year, consider a smarter way to make a difference — by donating appreciated stock to the National Blood Clot Alliance (NBCA).

When you donate stock instead of cash, you can:

- Avoid paying capital gains tax
- Receive a charitable deduction for the full market value
- Make a greater impact without spending more

It’s simple, secure, and your stock gift supports NBCA’s mission to save lives through education, awareness, and advocacy for the millions affected by blood clots each year.

✨ Give smarter. Save more. Stop the Clot.

Donate Stock Today → Link in bio.

#YearEndGiving #SmartGiving #Philanthropy #FinancialPlanning #StockDonations #StopTheClot #BloodClotAwareness

A blood clot diagnosis can leave you searching for

A blood clot diagnosis can leave you searching for answers and reassurance.

That’s where we come in.

Join us Tuesday, December 9 at 7 p.m. ET for a special PEP Talk designed for those who are newly diagnosed or still learning about life after a clot.

Our featured medical expert, Diane Wirth, MSN, ANP-BC, CACP, and member of NBCA’s Medical & Scientific Advisory Board, will guide you through what to expect and how to move forward with confidence.

We’ll talk about:

✔️ Blood Clots 101: Understanding your diagnosis and early recovery

✔️ Self-care and prevention: Steps to manage your condition and reduce risk

✔️ Navigating care: Working effectively with your healthcare team

Whether you’re beginning your recovery or supporting someone who is, this session offers practical information and peace of mind.

👉 Register: Link in bio.

#StopTheClot #BloodClots #VTE #NewDiagnosis #BloodClotAwareness

New research shows how quickly blood clot treatmen

New research shows how quickly blood clot treatment is evolving.

A national study found that thrombectomies, or procedures to remove pulmonary emboli from the lungs, have increased more than 700% since 2017.

Experts say this sharp rise reflects major improvements in technology that now make these minimally invasive treatments safer and more effective than they were a decade ago.

Most of these procedures are now done in outpatient hospital settings, reflecting how treatment for blood clots is becoming less invasive and more accessible.

💬 Have you undergone a thrombectomy procedure? If so, what was your experience like? Sound off in the comments!

Learn more: 🔗 in bio.

#StopTheClot #Thrombectomy #BloodClots #BloodClotTreatment

🏒 The National Blood Clot Alliance wishes a spe

🏒 The National Blood Clot Alliance wishes a speedy recovery to @BuffaloSabres forward Jiri Kulich, who has been diagnosed with a blood clot and is out indefinitely — the second NHL player this week to face this serious condition.

@Penguins forward Filip Hallander is also recovering from a blood clot and will be sidelined for at least three months.

Blood clots can affect anyone, even elite athletes. Factors like injury, dehydration, and long travel can increase risk. Knowing the signs — pain or swelling in an arm or leg, chest pain, or shortness of breath — can save lives.

🔗 Learn more about blood clots in athletes: Link in bio.

#StopTheClot #BloodClots #DVT #BuffaloSabres

🌟 November 12 is CTEPH Awareness Day. Chronic t

🌟 November 12 is CTEPH Awareness Day. Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare but serious complication that can occur after a pulmonary embolism (PE).

It happens when blood clots don’t fully dissolve, leaving behind scar-like tissue that blocks or narrows the arteries in the lungs. Over time, this can cause high blood pressure in the lungs and strain on the heart.

Common symptoms include fatigue and unexplained shortness of breath. Some people may also experience a dry cough, chest pain, or rapid heartbeat. About 1 in 25 people who have a PE could develop CTEPH.

👉 Last year, the National Blood Clot Alliance hosted a PEP Talk with Dr. Timothy Fernandes, pulmonologist at UC San Diego Health, to discuss CTEPH and other post-clot complications.

Dr. Fernandes emphasized that CTEPH is often underdiagnosed and that listening to patients’ symptoms is key to early detection. He also urges patients to push for answers.

🩸 Watch the full discussion: Link in bio.

👉Learn more about CTEPH and its symptoms: Link in bio.

#StopTheClot #CTEPHAwarenessDay #CTEPH #BloodClotAwareness

Charitable Giving Is Changing in 2026: What Every

Charitable Giving Is Changing in 2026: What Every Donor Should Know

⏰ Your giving calendar could affect your tax benefit.

✔️Itemizers: Giving by Dec. 31, 2025 means full deductions under current rules.
✔️Standard deduction filers: Waiting until Jan. 2026 may earn you that new above-the-line deduction.

The right timing depends on your tax situation — and your heart. 💙

No matter when you give, your support helps NBCA save lives through education, awareness, and advocacy for the millions affected by blood clots each year.

🔗 Read NBCA’s summary of 2026 tax changes: Link in bio.

#StopTheClot #YearEndGiving #SmartGiving #Philanthropy #FinancialPlanning #BloodClotAwareness #FederalTaxRules

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