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Family and Genetic Issues

100 Questions and Answers

About Deep Vein Thrombosis and Pulmonary Embolism

Part 15: Family and Genetic Issues

Click on any question below to read the answer.

If I have had a blood clot, do I need to be tested for thrombophilia?
If I learn that I have an inherited thrombophilia, what should I tell my family members?
If I have a family member who has had a blood clot or thrombophilia, but I have never had a blood clot, what are my risks?
If I have a family member who has had a blood clot or thrombophilia, but I have never had a blood clot, should I be tested for thrombophilia?

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If you’ve donated to NBCA for Giving Tuesday, le

If you’ve donated to NBCA for Giving Tuesday, let the world know and inspire others to do the same by sharing an UNselfie!

Here’s how to do it:

- Grab a sign that says why you’re supporting blood clot awareness (download our template or get creative!).
- Take a picture of yourself holding the sign (or just write your message on paper).
- Share it on social media and tag us @stoptheclot with #UNselfie and #GivingTuesday.

We’ll re-share your UNselfies throughout the day.

If you haven’t donated yet, now is the time! Donation and UNselfie links in bio.

Donate Now: https://bit.ly/DonateNBCAonGT
UNselfie Template: https://bit.ly/2024GivingTuesdayUNselfie

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

Donate and access the UNselfie template at the link in bio.

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

The day is finally here — it’s Giving Tuesday!

The day is finally here — it’s Giving Tuesday!

Each year, 100,000 Americans die from blood clots. Sadly, many of these deaths are preventable.

Awareness of the signs and symptoms can save lives, and you can help us combat this silent killer by standing in solidarity with us today.

To help make an impact on Giving Tuesday, we ask you to take action by making a donation to the National Blood Clot Alliance.

Join us in amplifying blood clot education and awareness across the nation and, most importantly, helping to save lives.

Time is of the essence, and we can’t achieve our mission to Stop the Clot without you. Your contribution is more than a donation, it’s a step towards a future where fewer people are dying of blood clots.

Please donate today!

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

Giving Tuesday is tomorrow! 🌟 Ready to make a d

Giving Tuesday is tomorrow! 🌟 Ready to make a difference? It's time to get your UNselfie ready!

What’s an UNselfie? It's a photo of YOU with a sign or a message showing why you support the National Blood Clot Alliance and why this cause matters to you. Whether you're a survivor, a caregiver, a clinician, or an advocate, your voice can inspire others to join the fight!

Here’s how to do it:

✅ Grab a sign that says why you’re supporting blood clot awareness (you can download our template or get creative!). Template: https://bit.ly/2024GivingTuesdayUNselfie
✅ Take a picture of yourself holding the sign (or just write your message on paper).
✅ Share it on social media and tag us @stoptheclot with #UNselfie and #GivingTuesday.
✅ Donate and help us reach our goal: https://bit.ly/DonateNBCAonGT

Your support will make a meaningful difference in the fight against blood clots.

🔗Links in bio.

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

Giving Tuesday is TOMORROW! Can we count on you to

Giving Tuesday is TOMORROW! Can we count on you to help us reach our goal and make a difference in the fight against blood clots?

The National Blood Clot Alliance has been on the front lines of blood clot awareness and prevention since 2003, but we can’t do it alone.

The power of us is what makes our mission possible. It's the collective strength of our community — survivors, caregivers, allies, clinicians, and advocates — coming together to prevent blood clots and save lives.

With your generosity this Giving Tuesday, we can amplify awareness, expand education, and prevent more lives from being impacted by this silent killer.

Will you join us? Donate for Giving Tuesday, December 3 at the link in bio.

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

Giving Tuesday is December 3 — just three days a

Giving Tuesday is December 3 — just three days away! This year, we’re celebrating The Power of Us, because when blood clot survivors, caregivers, allies, clinicians, and lawmakers come together, we can create real change.

Here are four ways you can make a difference this Giving Tuesday:

1. Volunteer your time
2. Start a fundraiser
3. Share on social media
4. Make a donation

Individually, we are strong. Together, we are unstoppable!

Download the toolkit at the link in bio or at: bit.ly/2024GivingTuesdayToolkit

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

"In 2015, six weeks after starting an estrogen-bas

"In 2015, six weeks after starting an estrogen-based birth control pill for perimenopausal symptoms and one month into an overseas trip, I experienced the first symptoms of what I now know to be deep vein thrombosis and multiple pulmonary emboli. Sadly, my years of experience as a critical care nurse did not help me recognize that something was wrong. I ignored my body's signals and told myself that I had a respiratory virus.

I was overseas for another week after the first symptoms appeared, then spent 7 days crossing the Atlantic Ocean on a ship. Upon arrival to the USA, I flew from New York to New Orleans. When I got off the plane, I felt horrible and I thought I just needed to rest and recover from my journey.

A week later (yes, another week), thanks to the insistence of my best friend who is also a critical care nurse, I went to the doctor. I was sent for an ultrasound and was diagnosed with a DVT, then sent to the ER. I was sent home with an apixaban prescription, my shortness of breath dismissed as anxiety.

I returned to the ER the next day, again at my friend's insistence, due to my continued shortness of breath and told them I wanted a CT scan. I was admitted to the hospital with a submassive saddle pulmonary embolism, multiple clots in both lungs, a large clot in my right pulmonary artery, bilateral pulmonary infarcts and right heart strain. Recovery was slow and the lingering shortness of breath was miserable and scary. I also struggled mentally, terrified that I would drop dead at any moment.

I've learned to advocate for myself and I've that community support is a vital component of recovery.

Thankfully, I have a wonderful, supportive family. With love, treatment, and time, I found my mental balance, my heart returned to normal, and my lungs improved dramatically.

Nine years later, I am focused on living fully. I travel and I love adventure. I still deal with venous insufficiency and shortness of breath but I'm in a good place and I appreciate every single day!"

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #dvt #pe #travel #birthcontrol #hrt #thrombassador #bloodclotawareness #bloodclotsurvivor

Happy Thanksgiving! Did you know that today is als

Happy Thanksgiving! Did you know that today is also Family Health History Day?

As you gather around the table with loved ones, we encourage everyone to have open conversations about your own family health history, including any occurrence of blood clots.

While several risk factors, including surgery, trauma, or prolonged immobility can contribute to the development blood clots, genetics plays a very significant role.

Take action today to shed light on your own medical history and the medical histories of relatives who came before you so that proper preventative measures can be taken. It could save the life of a loved one!

Learn more about genetic risks for blood clots at bit.ly/BloodClotTesting (link in bio).

#stoptheclot #bloodclots #vte #thanksgiving #familyhealthhistoryday #inheritedthrombophilia #thrombophilia #bloodclottingdisorder #knowyourrisk

When it comes to bleeding events, the clinical foc

When it comes to bleeding events, the clinical focus is often on "major bleeds," while "nuisance" or patient-relevant bleeds are frequently minimized or overlooked. In this discussion, we'll address concerns about all bleeding types while on a blood thinner, offer practical strategies for navigating these conversations, and explore how to determine which bleeds are serious and require medical intervention. We’ll also discuss how to balance safety with quality of life while on anticoagulants.

Reserve your spot at the link in bio!

#stoptheclot #peptalk #bloodclots #vte #bloodclotawareness #bloodcloteducation #anticoagulants #bloodthinners #bleeding #nuisancebleeding #patientrelevantbleeding

"In August 2023, I had my second bunionectomy. The

"In August 2023, I had my second bunionectomy. The first was in 2015 with no complications. This time would prove differently.

Preparing for surgery, I was advised by the surgical team to really curtail my activities in the following days. After surgery, I adhered to the instructions. I elevated my leg often and limited going up and down stairs. In retrospect, I think I limited my mobility too much.

On about days 5 and 6 post-surgery, I was beginning to feel aches and pains that I thought were normal aching. I did not associate calf pain with anything like a blood clot.

On August 17, six days after surgery, I began to feel pretty crappy. We had our grandson that day and I remember feeling very uncomfortable and tired.

Later that night, I was experiencing a sharp pain when I tried to breathe in. I thought maybe I was having a heart attack.

I got up and called a nurse friend. We decided I ought to go to the ER. On the way, the pain was excruciating. Within 30 minutes, I was diagnosed with a DVT and multiple bilateral pulmonary emboli. I was hospitalized for three days and given blood thinners.

In terms of risk factors, I have MTHFR and prothrombin II gene mutation. I also have a family history of clots — my mother had experienced a DVT. Plus, I was on an estrogen-based pill version of hormone replacement therapy for five months before my surgery. As a younger woman, I was a longtime user of birth control.

This experience has changed my lifestyle in that I am much more aware, but it has not curtailed my activities. I have lost 40 lbs and continue to be as active as possible. I also love to travel and really want to go at it for the next 10 years or so. Having a blood clot will not slow me down. I will just be much smarter, aware, and preventive.

I am now an NBCA Community Thrombassasor. I share and awaken others with my knowledge, experience, strength, and hope. Together, we can help stop the clot and prevent loss of life."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #vte #MTHFR #factorII #HRT #estrogen #dvt #pe #pulmonaryembolism #bloodclotsurvivor #bloodclotawareness #bloodcloteducation #thrombassador

After the sudden loss of her 41-year-old cousin, C

After the sudden loss of her 41-year-old cousin, Chandra, to a pulmonary embolism, Jill Cowley was moved to take action.

Determined to honor Chandra’s memory and raise awareness of blood clot risks, Jill joined forces with the National Blood Clot Alliance (NBCA) this year to organize the inaugural Chandra’s Stop the Clot Charity Golf Tournament in Oswego, NY. This event, followed by a banquet, raised significant funds, a portion of which was donated to NBCA in Chandra’s name.

Chandra, a devoted mother of two and a social worker with more than 10 years of service in Oswego County Child Protective Services, was also known for her warm spirit and famous Bloody Marys. Through this event, Jill not only commemorated her cousin's life but also sparked meaningful conversations about blood clot prevention in her community.

But Jill’s commitment to the cause didn’t stop there. Working in healthcare, she saw an opportunity to help deepen the understanding of blood clots among her fellow healthcare professionals. She organized another event to share NBCA’s no-cost continuing education program with her colleagues.

Most recently, Jill participated in NBCA’s Community Thrombassador training and continues to spread blood clot awareness at every opportunity.

Thank you, Jill, for being such a passionate volunteer. Your continued dedication to spreading Chandra’s legacy and supporting NBCA is deeply appreciated.

Read more about Jill at the link in bio.

#stoptheclot #thrombassador #bloodclots #vte #volunteering #bloodclotawareness #bloodcloteducation #pulmonaryembolism #golftournament

Giving Tuesday is December 3 — just one week awa

Giving Tuesday is December 3 — just one week away! This year, we’re celebrating The Power of Us, because when blood clot survivors, caregivers, allies, clinicians, and lawmakers come together, we can create real change.

Here’s an action you can take today: download and use our Giving Tuesday Toolkit!

With social messaging, fundraising tips, and blood clot awareness ideas, this toolkit makes it easy to inspire your network. Share it with your family and friends, and encourage them to join our lifesaving mission!

Why does it matter? Blood clots affect nearly one million people in the United States every year. By coming together, we can:

- Educate the public about prevention and warning signs
- Advocate for better care and resources
- Support those impacted by blood clots

Individually, we are strong. Together, we are unstoppable!

Get the toolkit at the link in bio.

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

Anticoagulants (blood thinners) are lifesaving med

Anticoagulants (blood thinners) are lifesaving medications that help in preventing and treating blood clots. However, they come with potential risks—most notably, an increased risk of bleeding. Understanding the different types of bleeding, what to expect, and how to manage them is crucial for patients on blood thinners.

In our December PEP Talk, we’ll explore the concept of nuisance bleeding, often referred to as "patient-relevant bleeding," how it differs from "clinically-relevant" bleeding, and when to seek medical attention.

Attendees will also leave with practical strategies to help reduce bleeding risk and stay safe, while maintaining quality of life while on lifesaving anticoagulant therapy. Plus, we’ll discuss the future outlook for new medication options. We hope you join us for this informative session!

Register: http://bit.ly/Dec2024PEPTalk (link in bio)

#stoptheclot #peptalk #bloodclots #vte #bloodclotawareness #bloodcloteducation #anticoagulants
#bloodthinners #bleeding #nuisancebleeding #patientrelevantbleeding

"In January 2024, I had an uncomplicated, five-hou

"In January 2024, I had an uncomplicated, five-hour labor on my due date. Immediately after handing my baby off, a nurse applied a standard procedure intervention known as controlled cord traction. I instantly felt sick and demanded she stop, but it was too late. My baby's placenta was shredded and forcibly ripped out of my body.

Within four minutes, I lost half of my blood (an amount that is often lethal) and went into a coma. After this massive blood loss I suffered a little-known complication called trauma induced coagulopathy, a response to physical trauma that can cause blood clots.

Basically, I lost so much blood that what was left solidified because it was trying to stay in my body.

These blood clots traveled to my lungs, and we suspect a small one made it to my brain. This is known as bilateral pulmonary embolism and stroke, two separate possible outcomes of dislodged clots.

My PE was substantial. A good portion of my left lung was infarcted, my right lung collapsed, and the right side of my heart threatened to fail.

The mini stroke took place within 24 hours of my hemorrhage. I woke up blind and unable to speak. The clots that traveled to my lungs presented weeks later. The first large clot in my right lung caused a sharp pain high up on the back of my neck. It felt like a severe pinched nerve, so bad that I couldn't turn my head.

The pain worsened with every breath and spread across my chest and back. When my lung collapsed, it became unbearable. I found myself once again unable to speak, this time because I could not breathe. I spent about a week in the ICU.

I lost a year of my life, but more importantly I traumatized my family and missed a year of their lives. I had to be cared for 24/7 for months, and nearly a year later I can barely consider myself independent.

I had asked my midwife if there was anything I could do to prevent blood clots and she said I had no reason to worry that I would develop a clot.

Every pregnant mother should be aware of the risks of cord traction and the inherent risk of blood clots during and after pregnancy."

Read more stories at the link in bio.

#stoptheclot

🩸 Living Your Best Life While Taking Blood Thin

🩸 Living Your Best Life While Taking Blood Thinners 🩸

Blood thinners are essential for preventing life-threatening clots, but they can sometimes cause “nuisance bleeding” that impacts the quality of a person’s day-to-day life. While not life-threatening, this type of bleeding can still be frustrating and inconvenient. Here are some examples:

- Frequent nosebleeds, or those lasting longer than five minutes
- Small cuts that bleed longer than usual, like shaving nicks
- Minor cuts or skin tears that may bleed for a long time

Surprisingly, more than half of all emergency room visits among people who take blood thinners are for these types of nuisance bleeds. Even though they’re not dangerous, they can lead some people to stop taking their medication, which puts them at risk of developing another life-threatening blood clot.

We created a resource to help those on blood thinners prevent and manage bleeding. Find it at the link in bio!

Join us for our next PEP Talk on Tuesday, Dec. 10 at 7 p.m. ET, where we’ll dive deeper into managing bleeding while on blood thinners. Register at the link in bio or at bit.ly/Dec2024PEPTalk

#stoptheclot #bloodclots #vte #anticoagulants #bloodthinners #bleeding #nuisancebleeding #peptalk #bloodclotprevention #bloodclotawareness #bloodcloteducation

"My daughter Sydney's blood clots began in 2020 af

"My daughter Sydney's blood clots began in 2020 after driving six hours to Mississippi and back. The next morning after returning home, she was out of breath and her leg was hurting badly and had a cramping feeling.

I knew immediately what was happening to her as I had been there before. I was hospitalized when Sydney was 9 with a severe DVT and PE. I immediately got her to the hospital to be checked out.

They did an ultrasound and found a clot in her lungs. They placed her on apixaban for only three months because of her age. In addition to myself, my sister and cousins also have a history of blood clots and protein S deficiency, but we went with the three months they had suggested.

Two years went by. In the spring of 2023, I woke up to hearing Sydney coughing a wet-sounding cough.

I knew it was happening again. She was hospitalized for five days and diagnosed with a saddle PE.
She was to be on blood thinners for the rest of her life. The doctors, myself, and my sister all told her she had to take it daily.

A few more months went by. One morning she came into my room and said, 'Mom, It's happening again.' I asked her if she had missed her medication, but she said no. Sydney passed on November 24, 2023.

She was very tall — 6 feet — and a beautiful soul. She was funny, a good person, and a giving person. She loved children and worked as a teacher at Trinity Early Learning Center in Atlanta.

During middle and high school, she did competitive cheerleading for the Stingray Allstars. She also cheered at Walton High School.

Sydney had been learning and practicing to be a DJ under the name DJ SYDUATION. She said to me, 'Mom, things are really looking up for me at work. I got a bonus check today and I have four DJ gigs coming up in December.' She passed the same day.

Sydney was my only child and she lived with me. She was 27 and had so much more life ahead of her. My world is broken, torn apart. My entire family and I are totally devastated.

My advice to others is to pay attention if you have a charley horse or cramp in your leg. Try flexing your foot and if that doesn't fix it and you begin to feel out of breath, seek help immediately."

@therealcharita

November is National Family Caregivers Month. This

November is National Family Caregivers Month. This month, we honor the incredible family caregivers who provide support to loved ones facing health challenges, including those navigating life after a blood clot.

Caregivers are the unsung heroes who:

✨ Advocate for timely diagnosis and care

✨ Offer comfort during recovery

✨ Help loved ones manage medications, treatment, and prevention plans

This year’s theme, “I Care,” highlights the compassion and dedication of family caregivers who stand by their loved ones through life’s toughest moments.

To all caregivers: thank you for showing the world what it means to say, “I Care.”

For NBCA caregiver resources, go to the link in bio.

#stoptheclot #bloodclots #NationalFamilyCaregiversMonth #NFCMonth #familycaregivers #ICare #bloodclotsurvivor #bloodclotpatient

📅 Mark your calendars — Giving Tuesday is alm

📅 Mark your calendars — Giving Tuesday is almost here!

Giving Tuesday—a global day of giving and kindness celebrated on the Tuesday after Thanksgiving—is less than two weeks away. This year, we’re highlighting The Power of Us: driving change, spreading awareness, and saving lives together. It’s a collective effort—patients, caregivers, clinicians, and communities all working side by side to make a difference and save lives.

This Giving Tuesday, your generosity can amplify the power of our community. Together, we can expand our impact in 2025, delivering lifesaving education, awareness, and resources to communities nationwide.

Join us in driving change. Save the date for Giving Tuesday on December 3, and please consider supporting NBCA on this global day of generosity. Together, we can save lives.

📣 Want to super charge your support? Set up a fundraiser to benefit NBCA for Giving Tuesday at the link in bio.

#stoptheclot #givingtuesday #givingtuesday2024 #globalgenerosity #bloodclots #vte #bloodclotawareness #bloodcloteducation #thepowerofus

"Not long after I turned 21, I started to notice t

"Not long after I turned 21, I started to notice the veins on the left side of my chest becoming extremely prominent. My left arm felt like it was falling asleep constantly throughout the day. It was strange, but I just assumed I had pulled a muscle or slept on it wrong.

I didn’t feel any pain, so I ignored it for about a week until I noticed my arm turning purple. It kept getting darker and more swollen so I rushed to the ER in a panic. I was instantly dismissed and the doctor told me I probably just overextended my arm, and that I was too young for it to be a clot.

I knew nothing about clots so I didn’t put up a fight, but I still felt like something was really wrong. I saw my primary doctor about a week later and she was furious that the ER dismissed my concerns. She immediately ordered me a CT scan, blood tests, and an X-ray, and within a few days my life changed drastically.

I got a call saying I had a DVT under my collarbone and a pulmonary embolism, caused by a condition called venous thoracic outlet syndrome. I started daily enoxaparin injections that night, and was contacted by a vascular surgeon who told me I would need two procedures. The first was a thrombectomy, and the second was a first rib resection.

The whole process was terrifying and it all happened so fast. I had to drop out of college and resign from a job I loved. It was really hard to see my friends live regular lives while I spent the year in recovery.

Luckily I have an incredibly strong support system and I’m surrounded by so much love. I wouldn’t have been able to do it without my family, partner, and friends. It took a lot longer to heal than I thought, but 10 months later I feel like I’m finally getting back to normal. I’ve just come off blood thinners and it feels amazing. Plus, I got to keep my rib in a cup which is really cool.

When you’re young and healthy you feel invincible, and being faced with a sliver of your mortality is life-changing. I value and prioritize my health so much more now. It’s extremely isolating to go through medical turmoil at this age. It helped so much to read other people’s stories."

Read more patient stories at the link in bio.

#stoptheclot

Anticoagulants are lifesaving medications that hel

Anticoagulants are lifesaving medications that help in preventing and treating blood clots. However, they come with potential risks—most notably, an increased risk of bleeding. Understanding the different types of bleeding and how to manage them is crucial for patients on anticoagulant therapy.

In our December PEP Talk, we’ll explore the concept of nuisance bleeding, often referred to as "patient-relevant bleeding," and how it differs from clinically relevant non-major bleeding (CRNMB), and major bleeding, and when medical intervention is necessary.

We’ll also provide practical strategies to help patients reduce their bleeding risk, stay safe, and maintain their quality of life while benefiting from lifesaving anticoagulant therapy, as well as future outlook for new medication options. We hope you join us for this informative session!

Register at the link in bio.

#stoptheclot #peptalk #bloodclots #vte #bloodclotawareness #bloodcloteducation #anticoagulants #bloodthinners #bleeding #nuisancebleeding #patientrelevantbleeding

After being diagnosed with blood clots in July, Ch

After being diagnosed with blood clots in July, Christian Barmore of the New England Patriots made an emotional return to the field on Sunday.

The 25-year-old defensive tackle expressed deep gratitude to his teammates and coaches for their support during his recovery. His powerful message: “Never give up and don’t quit... I told myself every day people are supporting me, and I love everybody here.”

Christian, thank you for using your platform to raise awareness about life-threatening blood clots. We’re cheering for you every step of the way!

A huge shoutout to the Patriots’ medical team for catching the warning signs and to his teammates and coaches for their unwavering support.

Barmore's story is a reminder to stay vigilant about blood clot awareness. Early detection and support can save lives. Learn about the signs and symptoms of blood clots at the link in bio.

#stoptheclot #bloodclots #vte #newenglandpatriots #christianbarmore #dvt #pe #americanfootball #nfl #bloodclotawareness #bloodclotsurvivor #knowyourrisk @barmore_ @patriots @NFL

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