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NBCA Video Series – Our Genes Our Stories

Stop The Clot Forum – October 2008 – Minneapolis

Learn how the Genetic Information Non discrimination Act protects you and your family. Now available on iTunes, click here to download to your iPhone or iPod.

Our Genes, Our Stories – Matt Bower – Genetic Testing Part 1 of 6

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 (Slide 17)

Visit NBCA’s You Tube Channel. Click here.

The video production for these programs was done by REM Video & Event Company, St. Louis Park, Minnesota.

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"In November of 2022, I was driving home from work

"In November of 2022, I was driving home from work when out of nowhere, my heart started hammering and went out of rhythm.

I made it home and told my partner that I wasn’t okay and needed to go to the ER immediately. We got as far as the local urgent care where I told him to stop. They called me an ambulance as I was experiencing atrial fibrillation, which had never happened before.

The next morning, my heart slipped back into rhythm and all was well. No formal diagnosis or reason was given, just an order to check in with a cardiologist.

Four days later, I woke up at home and couldn’t breathe. I was weak and felt like I was going to pass out. There was no pain, so I wasn’t sure what was happening. I just felt like I was suffocating and I was terrified.

We drove back to the same local ER. They ran some tests as I waited there for six hours. When the doctor did come back, they told me I was having a heart attack and that they were transferring me to another hospital.

Once at the new hospital, a very young doctor came in. He took a good look at my charts and then at me, and said, 'You’re NOT having a heart attack.' He sent me for an immediate CT scan where they found sub-massive bilateral pulmonary emboli, which had caused right heart strain.

I was treated with heparin in the hospital and was there for a week. Luckily they did not find any DVTs, and I was finally cleared to leave and was released on an oral anticoagulant.

After further genetic testing, no direct cause for my clots was ever found. My pulmonologist is a firm believer that my atrial fibrillation was caused by the clots and not vice versa, as they were too extensive and established.

Now I am a lifer on oral anticoagulants, which I am okay with. I am thankful every day that my second doctor was so well-trained in diagnosing and treating blood clots. I might not be here to tell the story otherwise."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #patientstory #bloodclotstory #bloodclotawareness #bloodclotsurvivor #bloodclotprevention #pulmonaryembolism #pe #afib #heartattack #misdiagnosis #pulmonaryemboli

NEW EPISODE! Episode 7 of Taking a Breath: A Stop

NEW EPISODE! Episode 7 of Taking a Breath: A Stop the Clot podcast is now available on all major podcast platforms.

In this installment, listeners will hear from Jennifer Smith, CEO of Everything Podcasts. She spent six months training for the Tough Mudder athletic endurance competition only to break her ankle just as she was about to finish the course.

Doctors told Jennifer to rest and stay still to allow the bone to fuse back together. But after more than a week of being immobile, she began to have a different pain in her leg. Instead of her ankle, though, it was in her calf.

This experience changed Jennifer’s life. Listen to her story at the link in bio.

@everythingpodcastsstudios

#stoptheclot #takingabreath #bloodclots #bloodclotpodcast #dvt #deepveinthrombosis #pts #postthromboticsyndrome #podcast #everythingpodcasts #bloodclotawareness

On October 25, 2017, Cydney Cobb’s 21-year-old d

On October 25, 2017, Cydney Cobb’s 21-year-old daughter Madison died suddenly of a massive pulmonary embolism. Since then, every March during Blood Clot Awareness Month, Cydney organizes a small walk in her memory, the “March for Madison,” to raise funds and spread awareness. This year the walk was held on March 30 and raised over $500, enough to sponsor an NBCA Thrombassador for an entire year.

“Madison did have all the classic signs and symptoms of a pulmonary embolism,” Cydney said. “She saw her doctor the day preceding, and was unfortunately misdiagnosed. If we had known her risk factors and the signs and symptoms, her death could have been prevented. Though I have suffered the loss of my child, I will continue to advocate all of my days in hopes my efforts could potentially save someone else’s.”

Thank you, Cydney and family, for your loving remembrance of Madison, your generosity, and your selfless dedication to spreading life-saving blood clot awareness.

#stoptheclot #marchformadison #bloodclots #bloodclotadvocacy #bloodclotawareness #fatalpe #pulmonaryembolism

Health equity means that everyone has a fair and j

Health equity means that everyone has a fair and just opportunity to be as healthy as possible. This requires removing obstacles to health, such as poverty and discrimination. Community-centered care is essential to address the alarming state of racial health disparities in the U.S. today. We are proud to work alongside @jnjhealthequity to promote health equity.

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

"My younger sister Marsha had many blood clots ove

"My younger sister Marsha had many blood clots over the years. She found out that she had protein S deficiency shortly after our father died in 1998. She had veins that were painful and found a doctor who was willing to strip them (phlebectomy).

Marsha asked him about her history with clots. The doctor told her not to worry and after the surgery she would no longer have clots. So, she had the surgery.

She came home and felt fine. She sent me an email that all was good. Shortly after reading the email, I had a call from another sister that Marsha was being life-flighted to a large hospital.

I called around and finally managed to talk to my mother. She was sobbing and told me Marsha never made the flight. She had coded four times in the ambulance and passed away.

It turns out that she had multiple pulmonary emboli in both lungs due to the surgery releasing them from her legs.

She left behind two young adult children and three grandchildren. Marsha was only 47.

Marsha’s son also has protein S deficiency and has had a DVT and PE. I have protein S deficiency, as do my son and daughter. My daughter has had a PE and my son has had a DVT and both are on blood thinners.

I worry about my grandchildren potentially having problems. I am cautious about what I do, but the worry is always there.

If your family has a history of clotting disorders, please get tested yourself. If you experience any of the signs of a clot get to the doctor immediately. Don't wait until it is too late."

Read more stories at the link in bio.

#stoptheclot #stoptheclotstory #varicoseveins #phlebectomy #fatalpe #pulmonaryembolism #bloodclotawareness #bloodclot #proteinSdeficiency

Congratulations to blood clot survivor @NellyKorda

Congratulations to blood clot survivor @NellyKorda on her historic win yesterday!

Korda, who was diagnosed with a blood clot in her arm in 2022, hasn't lost a tournament since January, and now she's a two-time major champion and ranked the No. 1 female golfer in the world.

She etched her name in the LPGA Tour record books Sunday, winning her record-tying fifth straight tournament with a 2-stroke victory in the Chevron Championship in The Woodlands, Texas.

Blood clot survivors can truly do anything!

#stoptheclot #nellykorda #espn #lpga #golf #bloodclots #bloodclotsurvivor #golfchampion

Proving #bloodclot survivors can do ANYTHING @nell

Proving #bloodclot survivors can do ANYTHING @nellykorda is chasing history this weekend at @thechevronchampionship @stoptheclot is rooting for you @nellykorda !! @lpgatour @espn @delta @goldmansachs @nike @taylormadegolf @tmobile

* Today, Anna Frutiger’s sorority, Zeta Alpha Pi

* Today, Anna Frutiger’s sorority, Zeta Alpha Pi at Kenyon College in Gambier, Ohio, is hosting their annual 5K Color Run to benefit the National Blood Clot Alliance in memory of Anna.*

"Anna embodied brains, beauty, compassion, and athleticism, and seemed the picture of health while she was living her dream of becoming a dentist. No one expected that a blood clot would end her life, and it seemed beyond belief that Anna died on May 20, 2010 from a pulmonary embolism (PE) due to an undiagnosed deep vein thrombosis (DVT), a month after her 23rd birthday.

Anna felt pain behind her knee and in her calf four months before she died and attributed it to her half marathon training. Her friends at dental school noted that she limped, and Anna became short of breath when she ran.

Anna saw an orthopedic surgeon who found no injury to suggest a muscle pull. After a thorough physical and review of her medical history, her doctor suspected a blood clot in her lower leg. Anna’s only known risk factor was that she was taking a third generation birth control pill. Results of an ultrasound/Doppler of her leg were negative for DVT. At a follow-up three weeks later, her leg was normal shape and size, and she no longer felt any leg pain. As a result, her doctor discharged her.

After her first-year finals at the University of Pittsburgh School of Dental Medicine, Anna traveled quite a bit. She flew for six hours over two consecutive weekends, then went to see friends in New York City the next two weekends, which involved an eight hour bus trip with one 10-minute stop. Anna complained of not being able to breathe easily when she carried groceries up to her apartment right after the bus trip. She told her parents that her symptoms were probably stress–related...."

Anna's full story at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #pulmonaryembolism #fatalpe #kenyoncollege #zetaalphapi #colorrun #bloodclotawareness #5k #charityrun

Blood, the journal of the American Society of Hema

Blood, the journal of the American Society of Hematology, published a paper in its April edition on the new class of anticoagulants currently under development that seek to prevent blood clots without putting patients at risk of bleeding.
This new class of anticoagulants inhibit a protein called factor XI, one of the several blood factors that regulates how the body forms clots.

The body generates two types of clots — good ones that stop bleeding caused by external injuries, and bad ones that develop inside veins and arteries.

Factor XI is involved in the formation of bad blood clots, or thrombosis. But researchers now believe that factor XI, unlike other blood factors, plays a minimal role in forming the good clots that stop bleeding. This suggests that drugs against it could prevent the bad clots without significantly disrupting the process that causes good clots, minimizing the bleeding risk associated with anticoagulants.

Read the research at the link in bio.

#stoptheclot #bloodclots #anticoagulants #factorxi

"I had my beautiful baby boy on August 26, 2023. I

"I had my beautiful baby boy on August 26, 2023. I had a low-risk pregnancy and a water birth with no complications.

At 2.5 weeks postpartum, I began to get a headache that I assumed was from sleep deprivation. As a migraine sufferer, I am used to severe headaches and had not been on my preventative medication for 12 months. I contacted my GP who advised it was probably a migraine.

However, my midwife saved my life when the next day she came to see me and insisted I go to Maternity Triage to get seen ASAP, and I was then able to take my newborn with me.

They quickly saw me and got me scanned. While I was feeding my newborn I was told I had an extensive blood clot in my brain known as a cerebral venous sinus thrombosis or CVST. I asked if I was going to die, to which they said they caught it just in time and started me on high-dose blood thinners.

The whole experience was very traumatic. I was low risk and had no clotting disorders, so the likelihood of this happening to me was so slim.

I was back in the hospital a month later with worsening symptoms but, luckily, they saw that the clot had started to disperse.

I was then on blood thinners for three months before having a clear CT scan. I am now six months post-CVST and still suffer from migraines as well as intracranial tension, sight issues, and medical PTSD.

I am hoping my story will urge more women to advocate for themselves during pregnancy and the postpartum period. If it wasn’t for my midwife, I wouldn’t be here today."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #pregnancy #postpartum #fourthtrimester #cvst #midwife #brainbloodclot #bloodclotawareness #bloodclotprevention #bloodclotsurvivor #severeheadache #PTSD

Throughout their lives, women face crucial choices

Throughout their lives, women face crucial choices that can contribute to their risk of life-threatening blood clots. That risk is increased if she previously experienced a clot, has a family history of blood clotting, or has been diagnosed with a genetic or acquired clotting disorder.

In recognition of Women's Health Month, join us for our May PEP Talk on Tuesday, May 14 at 7 p.m. as we explore this topic. Register at the link in bio!

#stoptheclot #bloodclots #peptalk #womenandbloodclots #pregnancy #birthcontrol #hormonereplacementtherapy #hrt #menopause #knowyourrisk #bloodclotprevention

Thank you, Temple Health, for reporting on NBCA’

Thank you, Temple Health, for reporting on NBCA’s behind-the-scenes involvement in the Charles Rochester Blood Clot Prevention and Treatment Act (HR 5699), introduced by Rep. Lisa Blunt Rochester (D-Del.)

Read the piece at the link in bio.

#stoptheclot #bloodclots #bloodclotadvocacy

"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

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