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Our Genes, Our Stories

Our Genes, Our Stories

September 8, 2013

Topics found in this video:

Learn how the Genetic Information Non-Discrimination Act protects you and your family
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

Events

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Jan. 2025 PEP Talk: Uncovering Your Family Health History

January 14, 2025

Virtual

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NBCA Thrombassador Training

January 16, 2025

Virtual

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2025 United Airlines NYC Half Marathon

March 16, 2025

New York, New York

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TD Five Boro Ride (1)

2025 TD Five Boro Bike Tour

May 4, 2025

New York, New York

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stoptheclot

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

We trained 20 new Thrombassadors last week who now

We trained 20 new Thrombassadors last week who now have the tools and knowledge to spread blood clot awareness in their communities.

Congratulations to our new class of Thrombassadors! Thank you for helping to save lives through education and awareness.

If you’d like to make a commitment to spreading blood clot awareness in 2025 and beyond, you’re in luck! Our next Thrombassador training is Thursday, Jan. 16 from 11 a.m. to 2:30 p.m. ET. Learn more and sign up at the link in bio.

#stoptheclot #bloodclots #thrombassador #bloodclotawareness #volunteering #bloodcloteducation #bloodclotprevention #bloodclotsurvivor

🎙️ New Episode Alert! 🎙️ Episode 4, Sea

🎙️ New Episode Alert! 🎙️

Episode 4, Season 2 of Taking a Breath: A Stop the Clot podcast is now available on all major podcast platforms.

In this episode, listeners hear from Teri Stanfield of Georgia, whose 21-year-old son Bryce died of a pulmonary embolism earlier this year.

As Teri tried to make sense of this tragedy, she turned to the National Blood Clot Alliance. Channeling her grief into advocacy, she trained to become an NBCA Community Thrombassador to help spread awareness of blood clots with the goal of saving lives.

Listen at the link in bio or wherever you get your podcasts.

#stoptheclot #takingabreath #bloodclotpodcast #dvt #pe #deepveinthrombosis #bloodclotfatality #brycestanfield #pulmonaryembolism #bloodclotawareness #bloodclotsurvivor #stanfieldstrong

"On Thursday, August 15, 2024, I had right knee su

"On Thursday, August 15, 2024, I had right knee surgery to repair a torn meniscus. On Saturday, I experienced cramping in my calf that radiated up to my knee and behind it. By Sunday I had shortness of breath and a racing heart, the pain in my leg was excruciating - hot and radiating up behind my knee.

I went to the ER. I explained my symptoms to the doctor and asked if he could test for blood clots. I read the post-op instructions and what I was feeling was spot on with DVT. I could tell he was a bit skeptical, but he agreed to run labs, CT with contrast, and a sonogram of my leg.

After many hours, he gave me the news: It was DVT in my right leg. The clot broke off and traveled to my lungs resulting in PE. Since this was a small, standalone ER, I was transported to the hospital by ambulance and admitted for treatment. I spent a few days in the hospital and was discharged home on apixaban.

My lifestyle has changed considerably. I was previously very active, in the gym three days a week. It’s taken some time to get back to the gym. I am short of breath just walking, and at times my heart rate spikes and I need to lay down.

I’m so thankful for the NBCA resources and support from other survivors, especially the Facebook group and community.

This was probably the scariest thing I’ve ever experienced and I am glad I listened to my body and took action. I’m also grateful to the hospital staff for taking care of me! I am a DVT and PE survivor!

My advice would be to listen to your body, follow post-op instructions and know the signs of DVT and PE."

More patient stories at the link in bio.

#stoptheclot #bloodclots #vte #pe #dvt #surgery #postopinstructions #bloodclotsandsurgery #bloodclotsurvivor #bloodclotawareness #bloodclotpatient #kneesurgery

A recent study suggests that GLP-1 medications, co

A recent study suggests that GLP-1 medications, commonly prescribed for managing diabetes and obesity, may also lower the risk of dangerous blood clots.

The study’s lead author is hematologist Rushad Patell, MD of Beth Israel Deaconess Medical Center in Boston and chair of NBCA’s Council on Emerging Researchers in Thrombosis.

According to the study’s findings, people taking GLP-1 drugs were 48% less likely to develop deep vein thrombosis or pulmonary embolism compared to those not on these medications.

While more research is needed, this discovery offers hope for new ways to prevent life-threatening blood clots, particularly for those at higher risk due to diabetes.

Read more at the link in bio.

#stoptheclot #bloodclots #vte #glp1 #glp1weightloss #glp1diabetes #knowyourrisk #reduceyourrisk #pulmonaryembolism #pe #dvt #deepveinthrombosis #bloodclotprevention #bloodclotawareness

Thrombophilia, a condition where the blood has an

Thrombophilia, a condition where the blood has an increased tendency to clot, can sometimes be inherited. This means certain genetic factors passed down from parents can increase the risk of blood clots.

If you or a loved one has experienced blood clots, understanding the role of genetics could be key to prevention and early detection.

✨ Patients Educating Patients ✨ Join us for our next PEP Talk on Jan. 14 at 7 p.m. ET to learn more about the connection between blood clots and family history with clinical expert Dr. Jordan Schaefer of the University of Michigan Health.

Register at the link in bio!

Read our resource on family testing for clotting disorders: Link in bio.

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

Teri Stanfield lost her only child, Bryce, to a bl

Teri Stanfield lost her only child, Bryce, to a blood clot. Her heartbreak fuels her fight to raise awareness so no one else experiences the same tragedy.

Now, YOU can join this fight and TRIPLE your impact.

Every dollar you give will be matched 2:1 by an anonymous donor until December 31—up to $30,000! That means your $1 becomes $3 in the fight against blood clots.

Your gift supports the National Blood Clot Alliance’s education and advocacy programs, empowering people like Teri to share lifesaving information in their communities.

💻 Donate today and help us save lives at the link in bio.

#stoptheclot #bloodclots #vte #pulmonaryembolism #pe #fatalpe #fatalbloodclot #brycestanfield #collegefootball #bloodclotawareness #bloodclotfatality #stanfieldstrong

“My family’s blood clot history begins as a gr

“My family’s blood clot history begins as a grim story, but it has now become a story of inspiration and hope.

Blood clots have tragically affected my family for many generations. Five of my closest relatives have had blood clot conditions. Two of us have survived, but we have lost three loved ones (my father at age 54, my brother at age 55 and my nephew at age 36).

It is clear that thrombosis runs in our family through some genetic disorder. Most of our family have been tested repeatedly for the five to 10 most common genetic abnormalities known to cause clots. But all the test results came back negative. So the causes of our family’s blood clot problems remained unknown –until recently…”

Learn more about Gerry’s story and how uncovering your own family health history may protect you against blood clots at our January PEP Talk on Tuesday, Jan. 14 at 7 p.m. ET.

👉 Register and submit your questions: bit.ly/Jan2025PEPTalk (link in bio)

#stoptheclot #bloodclots #vte #pulmonaryembolism #geneticsofbloodclots #peptalk #SERPINC1gene #bloodclotsurvivor #bloodclotawareness #bloodcloteducation #familyhealthhistory

As we pack our bags and hit the roads or skies for

As we pack our bags and hit the roads or skies for the holidays, it’s important to remember that prolonged sitting—whether on a plane, train, or car—can increase the risk of blood clots.

Most people travel safely, but factors like recent surgery, pregnancy, cancer, or a family history of blood clots can increase your risk.

Here are tips to prevent blood clots while traveling:

✔ STAY HYDRATED. When you’re dehydrated, your blood vessels narrow, and your blood thickens, increasing your risk for blood clots. Make sure to drink water and avoid alcohol and soft drinks.

✔ GET UP & MOVE. Sitting for four hours or longer can increase the chances of a blood clot developing, so it’s important to stand and walk on an airplane and stop for breaks while in a car.

✔ DO LEG EXERCISES. If you can’t get up, you can move your legs and feet while sitting to keep the blood flowing. Try making ankle circles; lifting your knees to the chest one at a time and holding it for several seconds; and extending your legs out straight and holding it in place.

✔ WEAR COMPRESSION SOCKS. Properly fitted compression socks can help stimulate blood flow and reduce swelling and discomfort.

✔ WEAR A MEDICAL ID. If you take an anticoagulant, or blood thinning medication, make sure to wear a medical alert bracelet or necklace. (And of course, don’t forget to pack your medication!)

Watch our Mini PEP Talk for more blood clot prevention travel tips at the link in bio.

Happy holidays and stay safe!

#stoptheclot #holidaytravel #bloodclotprevention #vteprevention #dvtprevention #dvt #deepveinthrombosis #economyclasssyndrome #bloodclotawareness #wanderwell #safetravel #frequentflyerhealth

Did you know blood clots often run in families? If

Did you know blood clots often run in families? If someone in your family has experienced a blood clot, your own risk may be higher too.

Understanding your family history and genetic risks is key to preventing dangerous blood clots like deep vein thrombosis (DVT) or pulmonary embolism (PE).

Join us for our January PEP Talk, featuring clinical expert Dr. Jordan Schaefer of the University of Michigan Health. We’ll explore how blood clots and genetics are connected and share actionable steps you can take to protect yourself and your loved ones.

When: Tuesday, January 14, 2025 at 7 pm ET

Register at the link in bio!

Don’t miss this important discussion—your family’s health could depend on it!

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

Bryce Stanfield, a 21-year-old college football pl

Bryce Stanfield, a 21-year-old college football player with dreams of becoming a dentist, died of a preventable pulmonary embolism on February 9, 2024.

More than a star athlete, Bryce was a volunteer at Greenville Children’s Hospital, reading to kids and giving them hope. This season, his teammates honored him with “Stanfield Strong” stickers on their helmets, a tribute to his commitment to helping others.

Bryce’s mother, Teri, continues his legacy as a dedicated NBCA Thrombassador, sharing life-saving information about blood clot risks, signs and symptoms. This year, our Thrombassador program surpassed one million people reached, but there is more work to be done.

This giving season, please donate in Bryce’s honor—or for a loved one of your own—and help us prevent future tragedies through life-saving education and awareness. Together, we can keep their legacies alive.

Donate at bit.ly/GiveBack2024 or the link in bio.

#stoptheclot #bloodclots #vte #pulmonaryembolism #pe #fatalpe #fatalbloodclot #brycestanfield #collegefootball #bloodclotawareness #bloodclotfatality #stanfieldstrong #athlete #thrombosis

"One morning I was feeling lightheaded, so I check

"One morning I was feeling lightheaded, so I checked my running watch and saw my heart rate was in the low 40s. I assumed I’d just stood up too quickly.

As the day went on, I felt some chest pressure, which I chalked up to anxiety, something I often experience with POTS. But the pressure worsened, and my heart rate fluctuated wildly from 41 to 190 during a meeting.

Afterward, I mentioned it to my manager, who urged me to call my primary care doctor. I saw a covering doctor who ran some tests, finding I was tachycardic. He ordered more labs, and I returned to work, still convinced it was just anxiety.

But when my lab results came back, my D-dimer was elevated. My manager and I were reviewing the results when the doctor called. He asked if I had a history of blood clots. My dad had a DVT and is on blood thinners for life, but I never thought I’d have to worry about that.

After some imaging was done, my doctor told me to come right to his office. When I arrived, he informed me that they had found a pulmonary embolism in my left lung and had to be admitted and started on blood thinners. I was 26, and my PE was caused by my birth control.

I was in shock but also incredibly lucky it was caught early. The doctor told me that if I’d waited much longer, the outcome could have been much worse.

This experience completely changed my perspective on health. I learned how easily symptoms like chest pressure can be dismissed, especially with a history of anxiety or chronic conditions. I’m grateful to the people who listened to me and acted quickly.

If I could share one thing, it’s this: always trust your body. Early detection saved my life."

At the link in bio, read more patient stories and register for our next PEP Talk on Jan. 14 on how a family history of blood clots could affect you.

Do blood clots run in your family? Have you or a l

Do blood clots run in your family? Have you or a loved one faced a clotting diagnosis that made you think about your family health history?

As we prepare for our January PEP Talk on family health history and blood clots on Tuesday, Jan. 14 at 7 p.m. ET, we want to hear your story. Sharing your experience can help others understand the importance of genetics and family history in blood clot awareness.

Submit your story at the link in bio. We’ll be sharing your stories in the weeks leading up to our January PEP Talk. (Register for PEP at the link in bio, too!)

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

Lace up for a life-saving cause! The United Airlin

Lace up for a life-saving cause! The United Airlines NYC Half Marathon returns on Sunday, March 16, 2025, and NBCA is excited to be back as an official charity partner.

Imagine running 13.1 miles through NYC’s iconic streets and past famous landmarks while raising awareness and funds to prevent blood clots and save lives.

Applications are now open! Secure your spot at the link in bio and join a passionate team dedicated to making a difference.

#stoptheclot #VTE #teamstoptheclot #UnitedNYCHalf #2025UnitedNYCHalf#halfmarathon #nychalf #nychalfmarathon #nyrr #bloodclotprevention #bloodclotawareness #charityrun #bloodclotsurvivor

Blood clots don’t discriminate. They can strike

Blood clots don’t discriminate. They can strike anyone, anytime—even young, vibrant individuals like Bryce Stanfield, a 21-year-old football player with dreams of becoming a dentist.

Bryce experienced fatigue, leg pain, and shortness of breath—symptoms mistaken for a muscle strain. Tragically, these were warning signs of a deadly blood clot. On February 9, 2024, Bryce passed away from a pulmonary embolism, which could have been prevented.

Now, Bryce’s mother, Teri, is turning her grief into action. Volunteering with the National Blood Clot Alliance (NBCA), she’s raising awareness about the symptoms and risks of blood clots to prevent other families from experiencing such heartbreak.

💔 No family should endure this loss.

💙 Together, we can make a difference.

👉 Donate at the link in bio to honor Bryce’s legacy—or a loved one of your own—and help NBCA educate more families and save lives.

Your tax-deductible donation before December 31, 2024 will support life-saving education and awareness initiatives across the country.

#stoptheclot #bloodclots #vte #pulmonaryembolism #pe #fatalpe #fatalbloodclot #brycestanfield #collegefootball #bloodclotawareness #bloodclotfatality

"I started having superficial clots (SVTs) in the

"I started having superficial clots (SVTs) in the early 1990s, which was attributed to birth control. Genetic testing was not available at that time. I joined a list serve (email group) to learn more.

Fifteen years later, with occasional SVTs and genetic testing now available, I was diagnosed with one factor V Leiden gene (heterozygous). In 2012, I had classic DVT symptoms: a very swollen and blue leg, which came two days after recovering from a bout of food poisoning and a day of hiking where immobility and dehydration had likely increased my clot risk.

The folks on that list serve encouraged me to get to the ER and told me to inquire about having a catheter-directed thrombolysis to break up the clot. I know that advice is why my post-thrombotic syndrome symptoms are minimal.

May-Thurner syndrome was found during that procedure and corrected with two stents. I've had two subsequent DVTs and one PE after a bit of medical gas-lighting. My hematologist and chiropractor both knew my clot history and genetic predisposition to clotting, but when I saw them complaining of rib pain with a deep breath, neither checked for a PE. A very painful 36 hours later, I was diagnosed with a PE in the ER.

I am thankful to have received treatment pretty quickly, mostly due to my self-advocating. I also learned that dehydration is something that triggers my clot episodes.

Today, I am blessed to have my health. I walk 2-4 miles daily, hike, downhill ski, and scuba dive, albeit a tad more conservatively than to lower my fall risk now that I take a DOAC (blood thinner).

I am happy to give back to the NBCA as a Thrombassador. The more people who know about clot symptoms and risks, the sooner those affected can get the help needed to live their best life. Knowing the symptoms, your risk factors, and self-advocacy are the keys to clot prevention and healing."

Read more stories at the link in bio.

#stoptheclot #bloodclots #vte #dvt #pe #factorvleiden #fvl #maythurnersyndrome #mts #bloodclotawareness #thrombassador #bloodclotsurvivor #stoptheclotstory #medicalgaslighting

Deck the halls with lifesaving information this ho

Deck the halls with lifesaving information this holiday season!

If you’re looking for a gift for someone who is passionate about blood clot awareness, or even yourself, we have a suggestion: A Stop the Clot ornament!

This double-sided ornament features Buster on one side and the STOP CLOT acronym on the other. It’s a unique way to spark conversations and spread awareness with family and friends as you celebrate the holidays together.

Shop now at the link in bio.

#stoptheclot #bloodclots #vte #ornament #holidayornament #stoptheclotornament #christmasornament #deckthehalls #bloodclotawareness

🎙️ New Episode Alert! 🎙️ Season 2, Epis

🎙️ New Episode Alert! 🎙️

Season 2, Episode 3 of Taking a Breath: A Stop the Clot podcast is now available on all major podcast platforms.

In this episode, listeners hear from Michael Philbin, a retired chemist from New Jersey. At 52 years old, he was diagnosed with prostate cancer and underwent surgery to treat the cancer.

“They told me that getting a blood clot in your calves and potentially in your lungs was one of the complications of the surgery and that I should walk around for at least five minutes every hour,” he said.

Four days after his cancer surgery, Michael started feeling the calf pain he had been warned of, which is a symptom of deep vein thrombosis. He was also tachycardic — his heart was beating up to 120 beats per minute, which is a sign of a pulmonary embolism.

He went to his local emergency room, where he was diagnosed with a clot in his leg and one clot in each lung. In the midst of being treated, a nurse told him that he doesn’t look like a patient with three blood clots.

“To which I said, ‘Well, what does a person with three blood clots look like?’ And she says, ‘They’re usually dead.’”

Listen to Michael’s story here or wherever you get your podcasts: https://www.stoptheclot.org/stop-the-clot-podcast/

#stoptheclot #bloodclots #vte #cancer # #bloodclotpodcast #vtepodcast #bloodclotawareness #bloodcloteducation #fightcancer #beatcancer #endcancer #cancersucks #prostatecancerawareness #prostatecancersurvivor #prostatehealth

"I simply woke up one day with a swollen painful r

"I simply woke up one day with a swollen painful right leg. I didn't think much of it until my lady suggested that I make my way to the ER for a quick check.

They did an ultrasound and found the clot from my knee to my calf. They immediately injected me twice in the stomach and put me on blood thinners. Nine months and two follow-up ultrasounds later, I was told by my doctor that I was back at 100%. There is no need for further use of blood thinners and I must monitor my compression sock usage.

Also, all my blood tests and checks came back perfect, so the underlying cause is just put down as a possible minor injury due to years of Muay Thai.

However, on my first day back my calf was slightly swollen, and my mind was playing tricks on me, as the mind tends to do. Now I'm worried about whether they missed something. These are top doctors, so I am sure I'm just overthinking it, but what if something had moved into my chest and they missed it? Would I know?

This experience has changed my lifestyle in that I'm a lot more aware of everything I eat, and I am back to training hard to bring my weight down and get my fitness back. I'm just trying to live a healthier lifestyle in general.

Being South African-based, this website has been a great resource to me. I wish I could be more involved in all of this. My advice to others is: When your body speaks, listen."

Read more stories at the link in bio.

#stoptheclot #bloodclots #vte #dvt #deepveinthrombosis #muaythai #muaythaiinjury #thaiboxing #sportsinjury #bloodclotawareness #compression

The NBCA Community Thrombassador program recently

The NBCA Community Thrombassador program recently hit a milestone: We’ve reached one million people with information on the signs and symptoms of blood clots!

But why stop there? Our goal is to have Thrombassadors in every state across the US. So far, we have coverage in 43 states. Just imagine how many more people we could reach if we had a Thrombassador in every state!

If you’re a blood clot survivor, caregiver, or advocate in any of the following seven states, please consider volunteering your time to spread blood clot awareness in your community.

- Kansas
- South Dakota
- North Dakota
- Montana
- Delaware
- Minnesota
- Rhode Island

Our next Thrombassador training is Saturday, Dec. 14 from 11 a.m. to 2:30 p.m. ET. For more information or to sign up, go to the link in bio.

#stoptheclot #bloodclots #vte #thrombassador #communitythrombassador #volunteering #bloodclotawareness #bloodcloteducation #bloodclotvolunteering

Thank you to everyone who joined our December PEP

Thank you to everyone who joined our December PEP Talk on understanding bleeding risks while on blood thinners with our expert, Dr. Jacob Cogan of the University of Minnesota.

In this clip, Dr. Cogan encourages anticoagulant users to take reasonable precautions to avoid injuries, but not to let the fear of bleeding prevent them from participating in activities they love.

Watch the full recording as well as our other PEP Talks at the link in bio.

We hope you’ll join us on Jan. 14 at 7 p.m. for our first PEP Talk of the year, where we’ll explore the connections between genetics and blood clot risk. Register at the link in bio.

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

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