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Understanding Genetics of Thrombophilia / Inheritance & Testing

Thrombophilia is a hereditary or acquired predisposition to develop blood clots. It is also referred to as hypercoagulation state or hypercoagulability. Below is a list of NBCA resources and articles related to genetic testing:

Talk to your healthcare provider about any questions you might have about genetic testing, and get more information and guidance from a genetic counselor. You can search for a genetic counselors in your local community here: Find a Genetic Counselor

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NBCA Names Corewell Health the Inaugural NBCA Center of Excellence

The NBCA Centers of Excellence designation recognizes excellence in clinical outcomes, patient education, and post-hospitalization patient care for blood clots.…

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Blood Clot Awareness Month Just Got Bigger and Brighter!

We are absolutely thrilled to reveal that the National Blood Clot Alliance has a public service announcement on the seven-story-high…

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"I was at the Walmart self-checkout. I had been fe

"I was at the Walmart self-checkout. I had been feeling sore and had a hard time catching my breath all day, and I collapsed in the self-checkout.

I came to, and people were standing over me. I say I'm all right, but my pain is getting progressively worse. I ended up driving myself to the emergency room.

I had been to the emergency room a few weeks prior for swollen feet because it did not seem right. They told me it was 'salt intake.' When I came back, they remembered me and knew it was more serious.

They found that I had a saddle pulmonary embolism and a clot still in my leg. I was later diagnosed with factor V Leiden, a blood clotting disorder.

In terms of risk factors, I had been sick the week before and I slept an entire weekend and barely moved. I had symptoms like COVID but never took a test.

Now I take blood thinners daily. I am an avid runner, but nowhere near the mile time I was at before all this happened.

I’ve learned to listen to my body. Also, just because people work in a hospital, doesn’t mean they know how you’re feeling. You know your body best. If you know something isn't right, get a second opinion! Stand up for yourself and do not let others make you think you are crazy."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #factorvleiden #bloodclottingdisorder #pulmonaryembolism #pe #deepveinthrombosis #dvt #bloodclotawareness #bloodthinners #bloodclotsurvivor #bloodclotpatient #bloodclotprevention #runner

Calling all rheumatoid arthritis patients who take

If you missed our PEP Talk last week on autoimmune

If you missed our PEP Talk last week on autoimmune conditions and blood clots, we have you covered! At the link in bio, check out our PEP Talk media library, where you can watch the recording as well as our other PEP Talks.

#stoptheclot #bloodclots #bloodcloteducation #bloodclotprevention #peptalk

** During Black Maternal Health Week, we’re elev

** During Black Maternal Health Week, we’re elevating stories of Black women who experienced blood clots during pregnancy or postpartum. **

"During my first pregnancy, I had been feeling faint. Soon after, I started getting headaches with flashing black dots in my eyes.

My midwife had told me that my blood pressure was higher than it should be, and that if I got any painful headaches and started seeing black dots, I should go straight to the hospital, so I did.

It turns out I had pre-eclampsia — a potentially dangerous pregnancy complication characterized by high blood pressure — and needed to be induced. I was upset, but glad I had answers.

The day before my induction, I woke up gasping for breath. I thought this may have been from the baby getting bigger, and I thought it was normal to be short of breath during pregnancy.

I knew there was a problem, though, when I went to my mother’s house that evening, as she was making me a lovely roast that I had requested as my last meal before giving birth

But I couldn’t even eat. I gasped for breath with every mouthful, and my chest felt extremely tight. My partner took me to the hospital straight away. I was seen three hours later and told everything looked fine. They offered me a bed, as I was heavily pregnant and due to be induced in the morning.

I was lying in bed crying and gasping telling the staff I could not breathe. I was told that I was fine, I just needed to sleep.

Finally, the next day, I was taken for a scan where blood clots were found in my lungs, or pulmonary emboli.

I blocked this out after I gave birth. I was too scared and anxious to face it at the time. It was a terrifying pregnancy and birth journey, but I am ready to face it now.

If you’re feeling short of breath, lightheaded, faint, dizzy, or experience any chest pain, please go to get checked out. If you know something within yourself is not okay and they have not done the full checks, please don’t take 'you’re fine' as an answer."

Read more stories at the link in bio.

@blackmamasmatter #stoptheclot #bloodclots #bmhw24 #blackmaternalhealthweek #reprojustice #birthjustice #birthequity #bloodclotawareness

Are you passionate about spreading deep vein throm

Are you passionate about spreading deep vein thrombosis and pulmonary embolism awareness in your community? Join our Community Thrombassador program!

Community Thrombassadors play a key role in our organization by raising blood clot awareness across the country. Thrombassadors attend community health events, host awareness activities, conduct outreach, and are always looking for opportunities to bring blood clot awareness into the community consciousness.

Our next training is Thursday, April 25 from 10 a.m. to 2 p.m. ET. If you’re interested, please fill out this pre-registration interest form at the link in bio.

#stoptheclot #bloodclotawareness #thrombassador #communityoutreach #outreach #bloodclotoutreach #bloodclotprevention #volunteering

"My daughter Kaylie passed away at the age of 21 f

"My daughter Kaylie passed away at the age of 21 from bilateral pulmonary emboli that had gone undiagnosed even though she had been to the doctor just three weeks prior to her death.

Her symptoms were severe upper back pain near her shoulder, shortness of breath, and rapid heart rate.

Unfortunately, she did not get to see her primary provider, and her symptoms were quickly dismissed as muscle strain and anxiety. No testing was performed and she was given a muscle relaxant for the pain.

I was with her that day and we both pleaded for something to be evaluated as this was the third episode like this in recent months and it just did not feel right. We were told to talk to her primary about it. We left feeling unheard and completely dismissed and we both knew something was not right.

Three weeks later, she woke up feeling nauseous and began vomiting. We thought she had picked up a stomach bug, but within the hour, her breathing became very labored. I asked if she needed to go to the emergency room, and she said yes.

We were preparing to leave the house, and the next thing I knew, she was face down on the floor. I immediately called 9-1-1, but it was too late. I performed CPR and they did all they could do once they arrived, but she was gone.

If only the doctor who saw Kaylie three weeks earlier had listened to us and had run some tests, just maybe my daughter would still be alive today.

Know the signs and symptoms and advocate for yourself and your family. Do not let any provider dismiss you when you know something is not right."

Read more stories at the link in bio.

#stoptheclot #stoptheclotstory #pulmonaryembolism #pe #fatalpe #proteinsdeficiency #birthcontrolpills #bloodclotfatality #bloodclots #bloodclotawareness #bloodclotprevention #misdiagnosed

Did you know that Black Americans have up to 30-60

Did you know that Black Americans have up to 30-60% higher rates of life-threatening blood clots than white individuals? National Minority Health Month is a time to focus on these health inequities and how to remedy them.

Studies have shown that Black people have higher blood clot mortality rates than any other group. Not only that, but Black women face higher rates of maternal mortality connected to blood clots during pregnancy and in the three months after giving birth.

We join @jnjhealthequity in prioritizing community-centered care in order to improve health outcomes for communities of color and drive health equity.

#stoptheclot #minorityhealthmonth #NMHM2024 #NMHM #jnj #healthequity #bloodclots #bloodclotawareness #bloodclotprevention #equalaccess

** During Black Maternal Health Week, we’re elev

** During Black Maternal Health Week, we’re elevating stories of Black women who experienced blood clots during pregnancy or postpartum. **

"Early in my pregnancy, I thought I’d pulled a muscle in my left calf. The pain was horrible for at least two weeks. I soaked it and elevated it, but the pain didn’t cease.

I went to urgent care but they sent me home and told me to continue to take Tylenol, ice, and elevate.

One day I woke up and couldn’t walk on the leg at all, I even had to use a cane. I went for another medical opinion and was immediately sent to the emergency room, where they diagnosed me with deep vein thrombosis (DVT), and was admitted.

They told me that because I was pregnant, I’d have to give myself injections twice a day to treat the clot. I was terrified, but here I am months later, thankful and still injecting myself twice a day.

Many people don’t know that the risk of DVT increases when pregnant. My advice to others is to be persistent in seeking medical attention when something doesn’t feel right."

Read more patient stories at the link in bio.

@blackmamasmatter #stoptheclot #bloodclots #bmhw24 #blackmaternalhealthweek #reprojustice #birthjustice #birthequity #bloodclotawareness

In case you missed it, NBCA this week designated C

In case you missed it, NBCA this week designated Corewell Health Grand Rapids Hospitals – Butterworth Hospital as our first NBCA Center of Excellence for its outstanding work in clinical outcomes, patient education, and post-hospitalization patient care for blood clots.

We’re grateful for FOX 17 West Michigan for spreading the word! Watch the piece at the link in bio.

#stoptheclot #bloodclots #centerofexcellence #bloodclotawareness #bloodclotprevention #corewellhealth @fox17online

🔊 Calling all patients! 🔊 Your voice matter

🔊 Calling all patients! 🔊

Your voice matters, and it's going to be heard loud and clear at the 2024 Urgent Care Convention from April 13-17 in Las Vegas! If you've ever visited an urgent care clinic with symptoms of deep vein thrombosis or pulmonary embolism, we want to hear from you. Your stories can help raise awareness among urgent care professionals and improve patient care. Share your experiences in the comments and let us know your journey to diagnosis and treatment.

#stoptheclot #urgentcareconference #urgentcareassociation #bloodclotadvocacy #bloodclotawareness #bloodclotprevention #bloodclotpatients

"I had knee surgery and was six weeks post-op, so

"I had knee surgery and was six weeks post-op, so I had no worries about clots. I was also on birth control, though.

I stretched one night and felt excruciating pain in my left rib. I could barely move. I managed to get to a hospital and was told it was costochondritis — inflammation of the cartilage connecting the ribs to the sternum — and anxiety. They gave me an anti-inflammatory medication and told me I’d be good.

Two days later, I could barely breathe. My heart was racing. I felt like I was going to pass out from short walks to the bathroom. I went back to the ER.

The doctor told me to calm down and that I was having an anxiety attack. My husband insisted that this was worse, and they then did a CT scan and found a 'small' clot in my left lung. They sent me home with rivaroxaban.

Less than a week later, I was back in the hospital. I thought I was having a heart attack this time. They did an immediate x-ray, where they found my pulmonary embolism had led to fluid buildup in my pleural sack. I had fluid from abdomen to collarbone and a collapsed lung.

My oxygen levels were normal and the only PE symptoms were ones that mimicked anxiety, so it was almost overlooked. I almost died and coded twice in my one week hospital stay. Two thoracentesis (a procedure to remove fluid from around the lungs using a needle), a chest tube, and just shy of three gallons of fluid removed from my chest, and I am still reeling from this four years later.

I live with anxiety that the next one may be the one that kills me, because the next doctor may also not believe me.

Through all of this, I’ve also learned to enjoy each day and embrace the silliness in life, which is why I chose this picture!

Trust your body. For me, it felt like a rod through my chest when it happened, and I knew something was very wrong. Don’t let anyone, especially doctors, gaslight you into dying like I almost did."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #pulmonaryembolism #pe #deepveinthrombosis #dvt #anxiety #kneesurgery #orthopedicsurgery #bloodclotawareness #bloodclotprevention #bloodclotsurvivor

Being a young and apparently healthy athlete does

Being a young and apparently healthy athlete does not prevent a person from developing potentially life-threatening blood clots. In fact, athletes face unique risk factors, including:

- Traveling long distances to and from a sports competition
- Dehydration during and after a strenuous sporting event
- Significant trauma
- Immobilization (brace or cast)

Despite these risk factors, some medical professionals don’t associate blood clots with those who are otherwise healthy and active, which means athletes suffering from blood clots are often misdiagnosed.

The National Blood Clot Alliance will be tackling this misconception at the American Medical Society for Sports Medicine’s Annual Meeting from April 13-15 in Baltimore.

Does this sounds like your story? Let us know in the comments.

Learn more about athletes and blood clots at the link in bio.

#stoptheclot #amssm #sportsmedicine #sportsmedicineconference #bloodclots #bloodclotprevention #bloodclotawareness #athletes

** During Black Maternal Health Week, we’re elev

** During Black Maternal Health Week, we’re elevating stories of Black women who experienced blood clots during pregnancy or postpartum. **

"I’m 47 years old and grateful to be alive. This is because I experienced pulmonary emboli (PE) on three separate occasions.

About six weeks [after giving birth to my second son, I began to feel tired and thought I was coming down with a cold. My mother suggested that I go to the emergency room just to make sure that I didn’t have pneumonia.

The doctor ordered an X-ray of my chest, which came back fine. At this point, I wasn’t sure what was going on, but I knew that something was not right. I asked if there were any other tests I could have. The doctor mentioned a VQ scan, but she noted that the technician would not be available for about two hours and suggested that I could come back the next day. Not wanting to waste any time, I said that I would wait for the technician. I’m glad I did — the VQ scan showed blood clots in my lungs (pulmonary emboli) and I was immediately admitted to the hospital. I was devastated.

The second incident was five years later. I was about 10 weeks pregnant with our third son when I began to feel as if an elephant was sitting on my chest. Eventually I passed out, and thankfully my husband was able to administer CPR. This was scary and traumatic for me and my family. I spent time in the hospital not knowing if my unborn child would even survive. An IVC filter was implanted in my vein to prevent any future clots from traveling to my heart, lungs, or brain. I also received enoxaparin injections twice a day throughout my entire pregnancy.

I still had the IVC filter and I was taking warfarin when my third clotting experience happened eight years later. The doctors ran multiple tests to find out why I keep having pulmonary emboli, but all of the tests came back fine. I’m now taking rivaroxaban once a day for life.

Not knowing what caused my PEs is frightening and frustrating. My advice to others is to remain proactive and listen to your body. You are your best advocate."

Read more stories at the link in bio.

#stoptheclot #bloodclots #bmhw24 #blackmaternalhealthweek

Founded by @blackmamasmatter, Black Maternal Healt

Founded by @blackmamasmatter, Black Maternal Health Week is recognized each year from April 11-17 to bring attention and action to improving Black maternal health. NBCA is proud to be part of the movement to help advocate for eliminating maternal mortality globally.

DYK blood clots are a leading cause of maternal mortality in the United States, and Black women are three times more likely to die from a pregnancy-related cause than white women? Everyone can play a role in preventing pregnancy-related deaths and improving maternal health outcomes and disparities. Join us by sharing this information and learning more at the link in bio.

#stoptheclot #bloodclots #bloodclotawareness #BMHW24 #BlackMamasMatter #BlackMaternalHealthWeek #ReproJustice #BirthJustice #BirthEquity

BREAKING NEWS: National Blood Clot Alliance has na

BREAKING NEWS: National Blood Clot Alliance has named Corewell Health Grand Rapids Hospitals – Butterworth Hospital as the inaugural NBCA Center of Excellence in the United States.

NBCA – the nation’s only patient advocacy organization dedicated to advancing the prevention, early diagnosis and successful treatment of venous blood clots – created this designation to highlight clinical settings that combine outstanding work in patient outcomes with the NBCA emphasis on patient education and post-hospitalization patient care.

“For too long NBCA has witnessed firsthand the gaps in venous thromboembolism (VTE) patient care," said Board Member and NBCA Committee Chair Justin Crockett. "By designating Corewell Health a Center of Excellence, we are acknowledging its commitment to both clinical excellence and patient education."

Read more at the link in bio.

#stoptheclot #bloodclots #centerofexcellence #bloodclottreatment #bloodclotawareness #bloodcloteducation #patientoutcomes

We want to take a moment to extend our deepest gra

We want to take a moment to extend our deepest gratitude to each and every one of you for your incredible support during Blood Clot Awareness Month (BCAM) this past March.

Together, we embarked on a mission to raise awareness and funds in remembrance of the 100,000 lives lost to blood clots annually. Our goal was ambitious: to raise $100,000 and reach 100,000 people with life-saving information about blood clots. Thanks to your dedication and generous support, along with the generous support of our corporate partners and sponsors, we are thrilled to announce that we’ve exceeded our expectations.

Together we raised an astounding $174,500, far surpassing our initial goal. Additionally, we’ve reached a record-breaking 4.8 million people with crucial information about blood clots. This is a testament to the power of community and collective action.

Thank you to everyone who contributed to this remarkable success. Whether you shared life-saving blood clot information, wrote to Congress, participated in our 100,000 Reasons Challenge, shared a loved one’s story, raised funds, donated, or volunteered your time, your efforts have made a significant impact.

Also, join us in celebrating the top three individuals and teams who crushed our 100,000 Reasons Challenge!

#stoptheclot #bcam #bcam2024 #bloodclotawarenessmonth #bloodclotawareness #bloodclotprevention #bloodclotsurvivor #bloodclotpatient

"I experienced deep vein thrombosis during my seni

"I experienced deep vein thrombosis during my senior year of college that turned into a pulmonary embolism, which derailed my baseball career.

My symptoms included shortness of breath, leg swelling, calf pain and fatigue. Upon being rushed into the ICU due to the size of my clot and severity of the PE, I was given a less than 10% chance of survival.

I vividly remember waking up to 18 surgeons at the foot of my hospital bed arguing about what could be done as if I wasn’t there. They agreed that they wanted to conduct an experimental procedure but needed me to sign a waiver.

I looked the head surgeon in his eyes and told him I wasn’t going to be their guinea pig and refused to sign the surgery waiver.

It was then said that being a young college athlete, there was a possibility that my body could recover on its own. I never thought I was going to see my 22nd birthday, walk across the stage at graduation, and much less ever wear a baseball uniform again. Needless to say I was able to beat those odds!

It was a difficult road to recovery physically, mentally, and emotionally. It took a lot of grit and perseverance but I’m proud to say I’m a blood clot survivor!

I hope my story helps inspire others to not let others define their life and to not lose hope even when the odds are against you."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclotsurvivor #bloodclotpatient #pulmonaryembolism #deepveinthrombosis #dvt #pe #athlete #baseball

HAPPENING TONIGHT! People with autoimmune disorder

HAPPENING TONIGHT! People with autoimmune disorders, including rheumatoid arthritis (as depicted here), an inflammatory disorder that affects your joints, may face a greater risk for blood clots. We’ll unravel the connection during our April PEP Talk at 7 p.m. ET tonight!

If you can’t attend live, we share our PEP recordings on our website and social platforms.

Join us! Register at the link in bio.

#stoptheclot #peptalk #bloodclots #autoimmunedisorder #aps #lupus #bloodclotprevention #bloodclotpatients #knowyourrisk #rheumatoidarthritis

HAPPENING TOMORROW! If you have been diagnosed wit

HAPPENING TOMORROW! If you have been diagnosed with an autoimmune condition, such as antiphospholipid syndrome, lupus, rheumatoid arthritis, or multiple sclerosis, you may be at risk for blood clots. During our next PEP Talk, hosts Leslie Lake and Todd Robertson will explore this topic with Dr. Jordan Schaefer and Dr. Jason Scott Knight, both of University of Michigan Health. Register at the link in bio!

#stoptheclot #peptalk #bloodclots #autoimmunedisorder #aps #lupus #bloodclotprevention #bloodclotpatients #knowyourrisk

"We made a family trip from Texas to Colorado at t

"We made a family trip from Texas to Colorado at the end of July 2022, which is an 8-9 hour drive.

Landon had asthma that was triggered by cedar. Since the trip, he had some allergy symptoms but associated that with the cedar.

On August 5, 2022, my brother went to urgent care with difficulty breathing, very low oxygen, and chest pain. His oxygen levels were in the lower/mid 80s, but he was sent home with a diagnosis of pneumonia and two antibiotics.

On August 7, he couldn't walk down the sidewalk without profusely sweating and getting completely out of breath. We all linked it to pneumonia that he had been diagnosed with two days prior.

He wasn't any better but not necessarily worse by the following day Monday, August 8. That evening, his symptoms were significantly worse. An ambulance was called, and he passed away on the way to the ER.

An autopsy was completed and we were informed he passed from a pulmonary embolism. Landon was only 35 years old.

A few days after Landon passed, one of our great uncles informed the family of his recent diagnosis with factor V Leiden. I went to get tested and was also positive for homozygous factor V Leiden. My father, aunt, great-uncles, and cousins have all tested positive since. We assume Landon also had factor V Leiden.

It’s important to educate yourself, even if you don't think it applies to you. Know the symptoms of blood clots, spread the word, and advocate for yourself when you feel a diagnosis is off. It can save your life or that of a loved one!"

Read more stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #plumonaryembolism #fatalpe #bloodclotawareness #factorvleiden #bloodclottingdisorder

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