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September 2017

September e-Newsletter | Listen to the Rhythm of Your Heart

Just like knowing your personal risk factors for blood clots, it is important to recognize if …

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BLACK Church Bus Tour

NBCA Addresses Health Disparities Through its First-Ever B.L.A.C.K Church Bus Tour

The National Blood Clot Alliance (NBCA) proudly announces the launch of its inaugural B.L.A.C.K. Church Bus Tour (Black Lives Advocating…

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Jen's Stuff - 2025-01-22T183641.855

NBCA’s 2024 Impact Highlights

As we reflect on 2024, we are proud to share the incredible strides we’ve made together in raising awareness, advancing…

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Advancing blood clot awareness, prevention, diagnosis, and successful treatments to #stoptheclot.

The National Blood Clot Alliance proudly announces

The National Blood Clot Alliance proudly announces the launch of its first-ever B.L.A.C.K. Church Bus Tour—Black Lives Advocating for Clot Knowledge.

This groundbreaking initiative will take place during Blood Clot Awareness Month in March 2025, visiting Black churches in six key cities across the Southern United States, home to over 55% of the Black population:

- Atlanta, GA
- Birmingham, AL
- Charlotte, NC
- Houston, TX
- Memphis, TN
- New Orleans, LA

“It is unacceptable that such a preventable condition remains a leading cause of mortality among Black Americans, especially Black mothers,” said NBCA Board Member and blood clot survivor Dr. Kakneka Mason.

The tour aims to address these critical health disparities by partnering with trusted local churches to deliver lifesaving blood clot education and awareness directly to Black communities.

Attendees will gain access to valuable resources, free screenings, expert speakers, and practical tools to protect themselves and their families from blood clots.

👉 Learn more at the link in bio (https://bit.ly/StopTheClotBusTour2025)

#stoptheclot #stoptheclotbustour #bloodclotawareness #bloodclotawarenessmonth #bloodcloteducation #bloodclotsurvivor #bustour #healthequity #blackhealthmatters

Blood Clot Awareness Month (March) is fast approac

Blood Clot Awareness Month (March) is fast approaching, and it’s time to take action! Join us for our 5th Annual 100,000 Reasons Challenge and be part of a movement that honors the 100,000 lives lost to blood clots each year.

By participating in this 31-day virtual challenge during Blood Clot Awareness Month, you’re not just moving your body—you’re raising awareness, supporting critical research, and helping prevent future tragedies. Your participation amplifies the voices of those we’ve lost and shows our collective commitment to honor their memories.

✔️ Choose any activity that promotes movement.

✔️ Set your own activity and fundraising goals.

✔️ Make a meaningful difference for Blood Clot Awareness Month.

Let’s make every step, every pedal, every stroke count. Join the Challenge today and help save lives!

👉 Sign up today at the link in bio (bit.ly/100kReasons2025)

#stoptheclot #BloodClotAwarenessMonth2025 #100KReasonsChallenge #100KReasonsChallenge2025 #MoveToStopTheClot #bloodclotawareness #bloodclotpatient #bloodclotsurvivor

The National Blood Clot Alliance honors the many a

The National Blood Clot Alliance honors the many accomplishments of Dr. Martin Luther King Jr. on this special day.

His words resonate deeply as we strive for a healthier, more just world: "Of all forms of discrimination and inequalities, injustice in health is the most shocking and inhuman."

Let's unite in the fight against health disparities.

#stoptheclot #mlkday

Undergoing medical procedures like LASIK, dental w

Undergoing medical procedures like LASIK, dental work, biopsies, or colonoscopies can be routine, but for individuals at risk of blood clots or on anticoagulation, they may require extra precautions.

Join us for our February PEP Talk on Tuesday, Feb. 11 at 7 p.m. ET to understand how medical interventions can influence clotting risks and learn practical strategies to navigate them safely.

During this PEP Talk, we’ll discuss:

✅How specific procedures may affect blood clot risks.
✅Key questions to ask your healthcare provider before undergoing a procedure.
✅Managing anticoagulation therapy and other medications during pre- and post-procedure periods.
✅Tips for recognizing signs of potential complications.

This session is designed to empower blood clot patients with the knowledge and tools needed to make informed decisions and confidently approach medical care. Don’t miss this chance to ask questions and gain valuable insights from experts in the field.

👉 Register at the link in bio (bit.ly/Feb2025PEPTalk)

#stoptheclot #bloodclots #vte #knowyourrisk #bloodclotsurvivor #bloodclotpatient #anticoagulants #peptalk #bloodclotwebinar #bloodclotrisk

"I am a healthy 23-year-old woman and had never ex

"I am a healthy 23-year-old woman and had never experienced any real health concerns in the past. I walk the same route every morning to work, but on this particular morning, I was out of breath almost instantly.

When I sat at my desk, I was still unable to catch my breath. It felt like the air was really thick, and my lungs were working overtime just to take in enough air.

Two hours later, I drove myself to the emergency department, where they took a blood test and found my D-Dimer level was elevated. After that, I had an ultrasound, a heart echo, and a CT scan, which revealed multiple large blood clots in all lobes of both lungs. I was in complete shock as I never thought anything like this would happen to me.

The doctor determined the cause to be the oral contraceptive pill, that I had been taking since I was 16. I was later diagnosed with factor V Leiden, and after being on blood thinners for six months, I am now off them and doing well.

This experience has given me a new perspective on life. Surviving something so serious made me realize how fragile health can be, even when you feel young and invincible. I’ve learned to prioritize my well-being and not to feel guilty about taking time for self-care.

I am forever grateful that I went to the doctor straight away, even though I was so hesitant at the time. Never let embarrassment stop you from getting help. I almost didn’t go to the hospital because I was worried about it being nothing, but going saved my life. Your health is far more important than worrying about what others might think."

Read more stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #vte #factorvleiden #FVL #birthcontrol #estrogen #knowyourrisk #PE #pulmonaryembolism #bloodclotawareness #bloodclotsurvivor

Thank you to everyone who joined our January PEP T

Thank you to everyone who joined our January PEP Talk on understanding the genetics of blood clots. We invited experts Dr. Jordan Schaefer and Dr. Karl Desch of the University of Michigan to join our discussion.

In this clip, Dr. Desch explains why some people with a genetic blood clotting disorder may develop clots and why others with the same disorder do not.

✅ Watch the full recording as well as our other PEP Talks: https://bit.ly/JanPEP25 (👉 link in bio)

✅ Subscribe to our YouTube channel to receive first access to the latest video content.

✅ Sign up to join us on Tuesday, Feb. 11 at 7 p.m. ET for our next PEP Talk, where we’ll discuss medical procedures and blood clots. Register: https://bit.ly/Feb2025PEPTalk (👉 link in bio)

(PEP Talk should not be considered as medical advice. Please consult directly with your healthcare provider for medical advice.)

#stoptheclot #bloodclots #vte #thrombophilia #peptalk #factorvleiden #patientseducatingpatients #bloodclotwebinar #familyhealthhistory #bloodcloteducation #knowyourrisk #geneticsandbloodclots

After experiencing unbearable pain and swelling in

After experiencing unbearable pain and swelling in his leg, Lavon sought answers but faced repeated misdiagnoses—until 5 YEARS later, when he finally discovered the truth. This is his story of perseverance, advocacy, and the importance of knowing your family health history.

Swipe through the carousel to read Lavon’s story and learn why trusting your instincts can be life-saving. 👉

#stoptheclot #stoptheclotstory #dvt #familyhistory #gaslit #misdiagnosed #bloodclotsurvivor #bloodclotawareness

HAPPENING TONIGHT: Don’t miss our January PEP Ta

HAPPENING TONIGHT: Don’t miss our January PEP Talk happening tonight at 7 p.m. ET! Join us to explore how genetics play a role in blood clot risk and what it means for you and your loved ones.

📅 When: Tuesday, January 14 at 7 p.m. ET.

📍 Where: Online – register now and submit your questions! (bit.ly/Dec2024PEPTalk -- link in bio!)

NBCA will host clinical guests: Dr. Jordan Schaefer and Dr. Karl Desch, both of the University of Michigan Health.

P.S. - If you can’t attend the live event, no worries! Register to be the first to receive access to the recording.

#stoptheclot #bloodclots #vte #thrombophilia #peptalk #factorvleiden #patientseducatingpatients #bloodclotwebinar #familyhealthhistory #bloodcloteducation #knowyourrisk #geneticsandbloodclots

Did you know blood clots can run in families? Unde

Did you know blood clots can run in families? Understanding the genetic factors that increase clotting risks is vital for prevention and awareness.

Join us TOMORROW for our first PEP Talk of 2025:

📅 When: Tuesday, January 14 at 7 p.m. ET.

📍 Where: Online – register now at the link in bio! (bit.ly/Dec2024PEPTalk)

This webinar will explore hereditary clotting conditions, what to know about family history, and how you can take proactive steps to protect your own health, and the health of your loved ones.

👉 Don’t miss this important session! Register to reserve your spot at the link in bio.

#stoptheclot #bloodclots #vte #thrombophilia #peptalk #factorvleiden #patientseducatingpatients #bloodclotwebinar #familyhealthhistory #bloodcloteducation #knowyourrisk #geneticsandbloodclots

"I had my first DVT and PE almost five years ago a

"I had my first DVT and PE almost five years ago at 21 years old. My leg was hurting, but I kept ignoring it. When my dog Kiko started sniffing my leg and whining, I felt that something was wrong because that was unusual behavior for him.

I went to urgent care, and they sent me to the ER. I had a massive clot in my entire leg and a PE. The doctor said I made it just in time.

Two weeks after having the clot cleared, I went for a follow-up and had already formed another massive clot. I had to get a stent put in my iliac vein due to May-Thurner syndrome, and I have to be on blood thinners for life because I also have factor V Leiden (heterozygous).

Since then, I have been treated for other venous diseases, including arteriovenous malformation (when blood vessels are abnormally tangled and form direct connections between arteries and veins, bypassing capillaries), nutcracker syndrome (when the left renal vein is compressed between the aorta and superior mesenteric artery) and congested pelvic syndrome (a chronic condition that causes pelvic pain, thought to be caused by enlarged veins in the lower abdomen) and wonder if they are all related.

I have pain in my legs still and have venous insufficiency, and I am trying to get better every day. I am grateful to my team of doctors and my doggy Kiko for saving my life!

I want to spread awareness that anyone can get a clot! Never give up and always keep fighting!"

Read more stories at the link in bio.

#stoptheclot #bloodclots #vte #pe #dvt #venousinsufficiency #FVL #factorvleiden #mts #maythurnersyndrome #bloodclotsurvivor #bloodclotpatient #bloodthinners #bloodclotawareness

Our next PEP Talk on the genetics of blood clots i

Our next PEP Talk on the genetics of blood clots is fast approaching! We hope to see you TOMORROW, Tuesday, Jan. 14 at 7 p.m. ET.

Thank you to everyone who has registered and sent their questions on this topic. Our experts, Dr. Jordan Schaefer and Dr. Karl Desch, both of the University of Michigan Health, will answer questions like these, which were submitted from our community.

There is still time to sign up and send in any questions you have! Register at the link in bio.

If you’ve already registered and would like to submit a question, please email info@stoptheclot.org.

#stoptheclot #bloodclots #vte #thrombophilia #peptalk #patientseducatingpatients #bloodclotwebinar #familyhealthhistory #bloodcloteducation #knowyourrisk #geneticsandbloodclots #bloodclotsurvivor

Staying active is essential for your health, but a

Staying active is essential for your health, but as a blood clot survivor, exercising in frigid weather requires extra care. As much of the US is experiencing a cold snap, we have some tips to keep you moving safely:

- Warm up indoors: Start with light stretches or activities indoors to get your blood flowing before heading outside.

- Dress for the weather: Layer up with breathable, moisture-wicking clothing to stay warm and maintain circulation.

- Ease into it: Avoid sudden, intense activity, which can stress your body. Choose moderate exercises like walking or gentle jogging.

- Stay hydrated: Cold air can be dehydrating—drink water before, during, and after your workout.

- Take breaks: Listen to your body. If you feel discomfort, especially in your legs or chest, stop and rest.

- Know the signs: Stay alert for symptoms of blood clots, such as swelling, pain, or redness in your legs, or sudden shortness of breath. Seek medical attention immediately if needed.

Winter workouts can be invigorating and safe with the right precautions. Let’s keep moving!

#stoptheclot #bloodclots #vte #exercise #bloodclotsurvivor #bloodclotawareness #coldweatherexercise #exercisesafety

Did you know? If a parent or close family member h

Did you know? If a parent or close family member has experienced blood clots, your risk could be higher, too.

This reality hits close to home for so many, like Todd, who lost his mother to a pulmonary embolism before genetic risk factors like factor V Leiden were even discovered. It wasn’t until he suffered multiple blood clots himself that the pieces started to come together—this was in his family all along.

Blood clots can run in families due to inherited conditions like factor V Leiden, which may increase your chances of developing a clot. Knowing your family history is a powerful tool—it helps you take proactive steps to protect your health.

Join us as we dive deeper into this important topic during our next PEP Talk on Tuesday, Jan. 14, at 7 p.m. ET. Sign up and submit your questions at the link in bio.

#stoptheclot #bloodclots #vte #thrombophilia #peptalk #factorvleiden #patientseducatingpatients #bloodclotwebinar #familyhealthhistory #bloodcloteducation #knowyourrisk #geneticsandbloodclots

Blood clot survivors: Set your sights on an unforg

Blood clot survivors: Set your sights on an unforgettable goal for 2025!

If you love bike riding, the TD Five Boro Bike Tour on Sunday, May 4, 2025, is the perfect event to add to your calendar. Imagine cycling through all five boroughs of New York City on car-free streets, soaking in iconic views and vibrant energy — an experience like no other.

Whether you're a seasoned cyclist or just a casual rider, this is a great opportunity to set a goal, train, and look forward to a day of adventure. Plus, you’ll be riding for a cause, supporting NBCA’s mission to raise awareness and save lives from blood clots.

Now’s the time to secure your spot. Applications are open! Learn more and apply at the link in bio.

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

"My story is about my daughter Amara. She was a vi

"My story is about my daughter Amara. She was a vibrant, free-spirited 14-year-old artist full of aspirations. Her life was tragically cut short on January 9, 2020 by a pulmonary embolism (PE) just three weeks after she was prescribed birth control pills to control her acne.

When Amara was prescribed birth control, I asked her pediatrician about the risks of blood clots. I don’t know why, I just have always heard it can cause them.

The doctor laughed, made a light hearted joke and said, 'Yeah, if you’re over 35 or a smoker. Mara, you don’t smoke do you? Nah? I think we’re good here, Mom.'

After waiting for what felt like an eternity, her autopsy results came back six months later to reveal that her death was caused by a combination of taking birth control and having an underlying blood clotting disorder known as factor V Leiden (heterozygous).

Unaware of Mara’s genetic predisposition, we had no reason to suspect a life-threatening risk would occur from taking the birth control pill.

I was tested for factor V Leiden and so was my other daughter. We are both negative.

Amara’s untimely death was a profound loss, not only for our family but to everyone who knew her. A loss like this highlights what in my opinion is a significant gap in our healthcare system: there is an absence of mandatory screening for genetic clotting disorders before prescribing medications known to increase clotting risks. This gap left Amara vulnerable and continues to leave many others susceptible to preventable tragedies.

I strongly believe that mandatory blood clotting disorder screenings should be implemented, especially before prescribing medications with known clotting risks to minors and adolescents. By raising awareness and pushing for proactive testing, we can work to bring change and prevent other families from experiencing the same heartache and loss!"

Read more stories at the link in bio.

#stoptheclot #bloodclots #vte #pe #pulmonaryembolism #birthcontrol #estrogen #bloodclotfatality #fatalpe #bloodclotawareness

Multiple wildfires are currently raging across the

Multiple wildfires are currently raging across the Los Angeles area, significantly impacting air quality.

Blood clot patients are not necessarily at increased risk unless they have underlying chronic lung or heart conditions, according to Dr. Nancy Amoroso, a pulmonologist and member of NBCA’s Medical and Scientific Advisory Board.

If you live in the impacted area, follow these tips:

- Monitor the air quality index for your local area.
- During times of poor air quality, stay indoors and keep your windows and doors closed.
- Consider using an air purifier or air filter to improve indoor air quality.
- When using HVAC systems or window AC units, make sure they are set to recirculate air.
- When outside, consider wearing an N95 respirator mask.
- Seek medical attention if you develop new or worsening respiratory or cardiac symptoms.

#stoptheclot #bloodclots #wildfires wildfiresafety #airquality #losangeleswildfires #eatonfire #palisadesfire #climatechange #bloodclotpatient #bloodclotsurvivor

"In the summer of 2012, I was training hard: runni

"In the summer of 2012, I was training hard: running, lifting weights, and eating clean. My goal was to be in my best shape for my best friend's bachelor party in Las Vegas on Labor Day Weekend.

My wife and I also took a trip to Europe. Naturally, I was sore and tired.

In early August, I was at my mom's doctor's appointment with her. While waiting in the lobby, I had a sudden pain in my chest and couldn't breathe. The nurses connected me to an EKG machine to make sure I was not having a heart attack. All was good. They said it was likely bad cramps from my morning back workout.

About a week later, my calf felt like a machete was cutting through it. I was told it was probably a torn calf muscle. So the next morning I went to the ER to get it checked out and sure enough, it was a DVT and PE.

Doctors were shocked that a healthy, active 33-year-old could have this.

Even after I got out of the hospital, doctors didn't know what to do. I was on Coumadin for a year.

Then in December of 2014, coming home on a bus from Key West, I noticed similar pain. For two years, I had been reading the NBCA's website and learning as much as I could. I immediately knew what it was and went to the hospital where they found another clot in my leg.

I also tested positive for HLA-B27 protein on my white blood cells. HLA-B27 is not directly associated with an increased risk of blood clots, but it is linked with an increased susceptibility to certain autoimmune diseases, which can increase the risk for clots.

The NBCA has been a helpful not just in my own recovery but has also armed me with the knowledge to save a few other colleagues of mine.

This experience has taught me that blood clot survivors can do anything, and that we are all a team. Anyone whose life has been affected by clots can relate with each other."

👉 Read more stories at the link in bio.

#stoptheclot #bloodclots #vte #dvt #pe #pulmonaryembolism #deepveinthrombosis #travel #chronicdehydration #bloodclotsurvivor #bloodclotawareness #athlete #stoptheclotstory

"On January 19, 2024, I received a call from my 13

"On January 19, 2024, I received a call from my 13-year-old son, Christian. He was struggling to breathe. He’d been unwell for weeks, starting with an unknown virus that had progressed to pneumonia. Just the day before, he was diagnosed and treated in an ER.

We took him back, assuming his breathing issues were a pneumonia complication. At the ER, they began treating him for pneumonia again, but Christian complained of sharp pain near his right ribs.

This was odd, as his pneumonia was in his left lung. I mentioned our family’s history of blood clots, but the doctor dismissed it, explaining that blood clots are rare in children.

He was about to discharge us when a sense of dread crept over me. Christian’s pain persisted, and I pressed the doctor again. He offered a D-dimer test to rule out clots, though he assured us it was unlikely.

When the test came back elevated, the doctor ordered a CT scan. The CT scan confirmed it— a pulmonary embolism that had broken off and pieces reached his right lung’s capillaries.

The doctor was shocked and apologized, recognizing how serious it could have been if left unchecked. Christian was terrified, especially since his grandmother passed from a pulmonary embolism 10 years prior.

He spent a week in the hospital, part of it in ICU. While hospitalized, he experienced rapid heart rate and high blood pressure and had to relearn to walk and rebuild his lung strength.

Genetic tests revealed he has factor V Leiden and two copies of the factor II prothrombin gene mutation. They also found a clot in his upper thigh, which we believe led to the PE. Disturbingly, he had no symptoms in his leg.

I got the New Patient Guide from NBCA and it was beneficial for him to read about what he is dealing with. The explanations are much more informative that what the hospital tells you. He also felt encouraged reading the personal stories that have been shared by athletes.

Christian’s recovery has been miraculous. His lungs have healed, his heart sustained minimal damage, and he’s back to his active life. Awareness is everything."

Read more stories at the link in bio.

Blood clot survivors can achieve incredible things

Blood clot survivors can achieve incredible things! 🏈💪 A huge congratulations to Trey Smith, Kansas City Chiefs offensive lineman and blood clot survivor, for being selected to participate in the 2025 NFL Pro Bowl Games starting next month! 🎉

After suffering a life-threatening pulmonary embolism during his sophomore year at the University of Tennessee, Trey thought his football dreams were over. But with resilience, determination, and the right care, his story was far from over—it was just beginning.

Today, Trey not only dominates on the field but also inspires countless others facing similar challenges.

Learn more about Trey’s recovery journey—including an exclusive interview with fellow blood clot survivor and Olympic medalist swimmer Katie Hoff: https://www.stoptheclot.org/news/treysmith/ (link in bio)

#stoptheclot #bloodclots #treysmith #kansascitychiefs #superbowl #probowlgames #nfl #probowl #nflprobowlgames #pesurvivor #pulmonaryembolism #bloodclotsurvivor @trey_smith @chiefs @kthoff7 @nfl

"I was diagnosed with my clot in February 2022 aft

"I was diagnosed with my clot in February 2022 after a period of immobility recovering from a torn hamstring. I was unaware of any underlying health conditions, and the blood clot was seemingly out of nowhere.

The medical professionals where I was living at the time placed me on blood thinners and left me to it, causing me to experience worsening pain and swelling, which was constantly ignored. My GP told me I was too young to be in such pain and accused me of drug seeking.

My leg was over triple the size of my other one, leaving me barely functional. I suffered like this for almost a year without intervention.

I moved with my family at the end of 2022. Rather than have my medical records transferred, I went to a new GP from scratch and got second opinions on everything. Through that, I got diagnoses of factor 2 prothrombin gene mutation (heterozygous), antiphospholipid syndrome, and post-thrombotic syndrome.

However, by the time of these referrals, the damage had already been done. I had permanent weakness in my leg, constant chronic pain radiating down my leg and left me stuck using a four-wheeled walker with a seat to assist me.

In addition to my injury and these diagnoses, my other risk factors included being overweight and taking estrogen-based birth control.

Due to this experience, I was unable to work and unable to walk without aids, causing me to suffer both physically and mentally. I have only just begun to attempt to recover my mental health.

My advice to others is to never give up, even if you’re at your lowest, and you probably will reach that point. But there is always a silver lining somewhere in the future, you just have to hold on to find it."

Read more stories at the link in bio.

#stoptheclot #dvt #vte #deepveinthrombosis #bloodclots #aps #antiphospholipidsyndrome #factorII #factor2 #prothrombingenemutation #pts #prothrombingenemutation #bloodclotsurvivor #bloodclotawareness

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