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January 2021 e-Newsletter

JANUARY E-NEWSLETTER: CONTINUING OUR WORK IN 2021

It’s a new year, but our mission remains the same. We’re looking forward to our …

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NBCA Hosting 5th Annual Fun Run in Honor of World Thrombosis Day

Did you know that World Thrombosis Day takes place every year on October 13 to turn the world’s attention to…

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National Blood Clot Alliance is conducting a research study about the experiences of patients with venous blood clots at the…

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

📣 Calling All Venous Blood Clot Survivors: Let

📣 Calling All Venous Blood Clot Survivors: Let your voice be heard! Take part in a confidential research study to better understand patient experiences at the time of diagnosis and treatment.

We also want to learn more about your feelings concerning clinical studies, and your willingness to engage in further discussions about clinical study design.

For more information and to participate in the study, go to the link in bio.

#stoptheclot #patientsurvey #venousbloodclotsurvey #bloodclotpatients #bloodclotsurvivors #patientresearch #bloodclotresearch

"In 2006, I completed my lacrosse fall season in

"In 2006, I completed my lacrosse fall season in my senior year at Eastern University. I was experiencing a lot of knee pain and after an examination, I was diagnosed with a torn meniscus. I needed knee surgery to clean out the knee and fix the tear.

The day after my surgery, I noticed that my foot was cold and I had some calf pain. The pain felt like a mild cramp, except the sensation never went away.

About 48 hours after surgery, the pain continued to worsen and my foot became extremely cold regardless of how many socks I put on. After a phone call to my surgeon, I was told to report directly to the emergency room for a CT scan of my leg and calf.

My diagnosis was three DVTs in my left leg, and I would need to report to my doctor's office for further instructions.

For three months, I gave myself a shot twice a day. After three months I was cleared to play lacrosse in my senior year.

In 2013, after a 14-hour road trip to Maine, I experienced significant calf pain again. I was diagnosed with another DVT in the same leg as before. I was told it was probably bad luck based on the previous clot and that I should be careful with sitting for too long.

In 2022, again after a long road trip, I experienced calf pain. Back to the ER and back on blood thinners. This time, I was referred to a hematologist. I am negative for factor V. I was put on rivaroxaban indefinitely.

Since I would be on blood thinners for life, I made some changes to my health and activity level. Running and biking have become not only a necessity to alleviate leg pain but also to improve my health as a whole. Over the last year, I completed a half marathon and a metric century (100K) on my bike and I'm looking to complete a full marathon."

Learn how to protect yourself from post-surgical blood clots at our next PEP Talk on Oct. 8. *Link in bio*

#stoptheclot #stoptheclotstory #bloodclots #kneesurgery #hospitalassociatedbloodclots #deepveinthrombosis #dvt #dvtsurvivor #bloodclotawareness #bloodclotsurvivor #marathon #athlete

It’s important to maintain a healthy lifestyle a

It’s important to maintain a healthy lifestyle after a blood clot in order to prevent a recurrence. If you’re a blood clot survivor, we have a great way for you to ease back into exercise: NBCA’s 5th Annual Fun Run.

Anywhere and anytime between October 11-14, you can choose to run, walk or roll a distance of one mile, 5K, or 10K in commemoration of World Thrombosis Day (October 13).

It’s a perfect way to stay active, connect with others, and honor your journey to recovery. Let’s keep moving together! 🏃‍♀️🏃‍♂️

👉 Sign up today at the link in bio.

September 18 is National HIV/AIDS and Aging Awaren

September 18 is National HIV/AIDS and Aging Awareness Day, a day to address HIV’s impact on adults 50 and older.

Did you know that older age and HIV are both risk factors for blood clots? Patients who are diagnosed with HIV are at 2-10 times greater risk of developing a blood clot than the general population. Help reduce stigma and promote prevention, testing, and treatment among older adults. More info at the link in bio.

#stoptheclot #NHAAD #stophivtogether #knowyourrisk #hiv #aids #bloodclots #olderadults #bloodclotprevention #bloodclotawareness #bloodcloteducation

The New York Marathon is less than two months away

The New York Marathon is less than two months away and training for Team Stop the Clot runners is in full swing! As the November 3 race date draws near, we’re showcasing each of the remarkable individuals who will run the iconic 26.2 miles in support of NBCA.

Hilary Malecha is running in honor of her father Mike, who died of a pulmonary embolism in March.

“I want to raise money and awareness to prevent anyone else's family from experiencing the pain my family has felt from my father's unexpected passing this March from a pulmonary embolism. One blood clot changed my entire world and took my biggest hero and supporter from me and my family way too soon. The ironic thing is he would think running 26.2 miles was nuts! ‘Better you than me,’ he would say as he laughed his quintessential shoulder-shrugging laugh. That wouldn’t have stopped him from being there to support me and my equally crazy friends, Emily Fetherston and Katie San Felipe, through this training and race day.”

Support Hilary’s fundraiser for NBCA at the link in bio.

#stoptheclot #nycmarathon #nycmarathon2024 #bloodclots #bloodclotsurvivor #bloodclotpatient #anticoagulants #pulmonaryembolism #pe #pesurvivor #bloodclotawareness

"My husband and took a trip to Destin, Florida for

"My husband and took a trip to Destin, Florida for a long weekend after finding out my breast biopsy surgery was benign. We drove 14 hours in one day from Michigan and returned a few days later, only stopping twice for gas.

I returned to work and walked to my office, up two flights of stairs. I felt out of breath and joked I must have overdone it on my short trip with sweets and drinks. After work, while coaching my son’s 1st-grade robotics team, I started feeling achy all over. I took some ibuprofen and continued on.

Later that night, I was prepping for a big interview in the morning and I still didn’t feel good. I decided to take a Covid test, which was negative. So I took another dose of ibuprofen and went to bed at 10 p.m.

Around 1 a.m. I woke up with pain between my shoulder blades and the right side of my chest. I thought maybe it was gas, but the pain progressively got worse when I laid down or took deep breaths.

Knowing I had this interview at 7 a.m., I thought I’d just make it through that and get it checked out after. But by 3 a.m., I woke up my husband said I think I need to go to the hospital. I walked into the ER complaining of chest pains every time I took a breath.

I was seen immediately and blood work showed elevated platelets and high D-dimer. A CT was ordered. The results showed that I had multiple bilateral PEs and a large clot causing right heart strain.

I was immediately placed on a heparin drip and transferred to another hospital where I underwent a thrombectomy 18 hours later. No DVT was ever found.

The clot was the size of a golf ball. When I saw my hematologist later, he said on a scale of 1-10, with 10 being death, I was at a 9.

Testing ensued and no genetic factors were found. I was placed on apixaban for a year and then as needed when traveling over two hours.

Also, because of my blood clot experience, I was able to help an employee get medical attention for a DVT based on hearing his symptoms.

My advice to others is to pay attention when your body talks to you. And don’t be afraid to go to the ER. It’s why they are there. Recovery is a slow process, but it does happen."

Read more patient stories at the link in bio.

Today is World Patient Safety Day, a time for heal

Today is World Patient Safety Day, a time for healthcare providers and patients to work together to increase patient safety.

This year’s theme is focused on recognizing the crucial role of a correct and timely diagnosis in improving patient safety.

People suffering from deep vein thrombosis or pulmonary embolism are often misdiagnosed because these conditions can mimic other issues. Many of our patient stories reflect the serious consequences that can happen when the voices of patients are not heard.

In fact, a 2023 NBCA survey of blood clot survivors showed that 35 percent didn’t receive the correct diagnosis the first time they sought treatment, and 50 percent had at least three health care visits before they were correctly diagnosed.

We stand with patients who have had to become the “squeaky wheel” by insisting on more testing until a correct diagnosis is made.

Read stories of patients who used their voices to get the care they needed at the link in bio.

#stoptheclot #worldpatientsafetyday #patientsafety #misdiagnosed #misdiagnosis #bloodclots #bloodclotprevention #bloodclotawareness #bloodcloteducation

September is National Sickle Cell Awareness Month.

September is National Sickle Cell Awareness Month. Did you know that both the sickle cell trait (SCT) and sickle cell disease (SCD) can increase the risk for blood clots?

In the United States, 1-3 million people have the sickle cell trait (SCT), and of those, 100,000 have sickle cell disease (SCD). A 2020 study published by the American Society of Hematology found that individuals with SCD have up to a four-fold higher risk of developing VTE compared to the general population.

SCT disproportionately affects the Black community. However, new research unveiled last week shows that SCT is a modest risk factor for blood clots across all populations.

A study by the National Institutes of Health and 23andMe researchers found that the SCT isn’t only an issue for Black and African Americans.

“Because sickle cell trait is often associated with people who identify as Black or African American, it is not widely studied in other populations, a bias that has led to unintended harm for those with sickle cell trait,” says Vence Bonham Jr., who co-led the study.

Read more at the link in bio.

@nihgov @23andme #stoptheclot #bloodclots #sicklecellawareness #nationalsicklecellawarenessmonth #sct #sicklecelltrait #bloodclotawareness #bloodclotresearch #bloodcloteducation #knowyourrisk

🩸 Maternal Mortality & Blood Clots: Know the Ri

🩸 Maternal Mortality & Blood Clots: Know the Risks, Save Lives 🩸

Did you know blood clots are a leading cause of maternal death in the US, which disproportionately impacts Black Americans? Early detection and prevention are critical. If you're expecting or recently gave birth, talk to your doctor about the signs of blood clots and the steps you can take to reduce your risk.

We were inspired to have attended the Black Maternal Health Conference and Training Institute in Atlanta last week, joining more than 600 Black maternal health advocates fostering collaboration and shining a light on this important issue.

Let's protect new moms and ensure every pregnancy ends with a healthy outcomes for all families. Share this video to spread awareness and assess your risk at the link in bio.

@blackmamasmatter #stoptheclot #BMHC24 #bloodclots #maternalmortality #newmamasmatter #postpartumbloodclots #pregnancy #maternalbloodclots #knowyourrisk

Ken Counihan of Cleveland, Ohio was a 62-year-old

Ken Counihan of Cleveland, Ohio was a 62-year-old runner who had no known blood clot risk factors (other than his age) when he nearly died of a pulmonary embolism in 2022. His Apple Watch tipped him off that he had low blood oxygen levels, prompting him to seek quick care.

Ken tells his story in the latest edition of Parade. Hear how Dr. Leben Tefera from the Cleveland Clinic, a member of NBCA’s Council of Emerging Researchers in Thrombosis (CERT), helped Ken through his ordeal.

Read the piece at the link in bio.

@parademag #stoptheclot #bloodclots #pulmonaryembolism #pe #pesurvivor #smartwatch #bloodclotsurvivor #bloodclotprevention #bloodclotawareness #bloodcloteduccation #parademagazine #CERT

Are you or a loved one facing a hospital stay soon

Are you or a loved one facing a hospital stay soon? It’s crucial to know that hospital stays—especially for surgery, trauma, or a serious illness like cancer—can significantly increase the risk of life-threatening blood clots.

Here are key risk factors for hospital-associated blood clots:

- Pregnancy
- Cancer and its treatments
- Personal or family history of blood clots
- Birth control or hormone therapy with estrogen
- Smoking
- Overweight
- Age 55 or older
- Long-term diseases such as heart and lung conditions or diabetes

Learn more about hospital-associated blood clots and how to prevent them at our next PEP Talk on Tuesday, October 8 at 7 p.m. Register at the link in bio.

#stoptheclot #peptalk #bloodclots #hospitalassociatedbloodclots #knowyourrisk #livewebinar #bloodclotawareness #bloodcloteducation #bloodclotprevention #kneesurgery #safesurgery

"I want to advocate for new moms-to-be so they don

"I want to advocate for new moms-to-be so they don't die as our daughter did—right here in Northern Virginia. The United States has one of the most advanced health care systems in the world, yet pulmonary emboli are a leading cause of death among new mothers, even in highly educated, highly served areas.

Monica lived just outside of Washington, DC where the health care is generally excellent, and yet she has died from a treatable ailment. Please listen and spread the word of 'Monica’s Plea' not just to new moms, but to all who are in contact with new moms. Information and awareness prior to giving birth is key to stopping premature deaths for mothers. We must also get the word out to doctors, nurses, hospitals, midwives, medical schools, clinics, and women of childbearing age.

New mom-to-be, as you and your family are planning for the arrival of the new little one, I implore you to include some essential education for yourself. Not all doctors’ offices, midwives, and hospitals effectively communicate the warning signs of a potential PE pulmonary embolism. A PE is when a blood clot in a vein is carried to the lungs, usually resulting in death.

I want to passionately inform you in memory of our late daughter Monica to please call your doctor with any new symptoms after delivery (and up to a year postpartum) to learn if you should be concerned and need to go to the ER.

Symptoms include throbbing or cramping pain, swelling, redness and warmth in a leg or arm, shortness of breath, dizziness, and chest pain. Please don’t put off telling your doctor until your six-week follow-up. Monica thought her calf tightness that caused her to limp was from the epidural, and she 'hurt all over' from her hard labor. Twelve days after giving birth, she collapsed and died of a PE, leaving her family bereft and her infant son without his mother.

Many have wondered, 'How could this have happened in 2024?' Our daughter was an athlete and suffered her share of injuries. She and her husband were sleep-deprived caring for their new son, and Monica wasn’t thinking about herself..."

Continue reading Monica's story at the patient stories link in bio.

#stoptheclot #monicasplea

The National Blood Clot Alliance is encouraged by

The National Blood Clot Alliance is encouraged by Senate Majority Leader Chuck Schumer’s recent remarks that recognized blood clots alongside other major health conditions such as cancer, diabetes, and heart disease.

His comments came during a visit to a New York pharmacy to promote a federal program that will lower the cost of 10 of the highest-cost drugs in Medicare.

In his speech, Schumer emphasized the importance of addressing serious health issues, stating, “These are some of the most common drugs and they deal with some of our most serious problems, cancer, diabetes, heart disease, blood clots...”

We appreciate this increased recognition of blood clots and look forward to continued progress in improving patient access to necessary treatments.

Read more at the link in bio.

#stoptheclot #bloodclots #bloodclotawareness #bloodcloteducation #bloodclotpatients #bloodthinners #anticoagulants #medicare @senschumer

"I was diagnosed with a DVT and bilateral pulmonar

"I was diagnosed with a DVT and bilateral pulmonary embolism on April 10, 2024.

I underwent a biopsy for a uterine cyst in November 2023 and subsequently had my menstrual period for almost 30 days. My gynecologist prescribed me birth control to stop my period.

From mid-January until April, I was taking four birth control pills a day to control my cycle and minimize my blood loss. Around the last week of February, I woke up with sharp foot pain. I couldn’t stand or fully extend my foot.

As an avid runner, I dismissed the pain as a bout with plantar fasciitis and continued on with my day. Over the next three weeks, I went on a cruise, went to work, worked out, and hung out with friends pushing through the pain. I would take ibuprofen every now and then.

On April 7, I woke up with what I thought was the worst charley horse I ever had. I couldn’t stand and my leg was warm to the touch. I called my mom, who survived a DVT a few years prior, and she urged me to go to the ER. I refused and went to a local urgent care.

The doctor there dismissed my symptoms as a pulled muscle and prescribed me a muscle relaxer. The next two days I limped to and from work in agony.

On April 10, I woke up and I couldn’t breathe, my heart was racing, and I couldn’t get myself out of bed. I called my husband to take me to the ER. The triage doctor again said it was a pulled muscle and told me to ice my leg.

As I started to limp out, a nurse saw me, put me in a wheelchair, took me back to the same doctor, and said, 'This isn’t a pulled muscle. Look at her leg.' That woman was my guardian angel and I am so thankful for her.

The doctor had to cut my pants off because my leg was so swollen. He looked at me and said, 'I didn’t take you seriously at first but, I am taking you seriously now.' I went on to receive a slew of testing and an overnight hospital stay. If that nurse hadn’t advocated for me, I would not be here right now.

I was diagnosed with antiphospholipid syndrome, an autoimmune condition that can increase the risk for blood clots...."

Read Kourtney's full story at the link in bio.

#stoptheclot #stoptheclotstory

🏃‍♂️ Join us for the National Blood Clot

🏃‍♂️ Join us for the National Blood Clot Alliance's 5th Annual Fun Run from October 11-14 in honor of World Thrombosis Day! Every step we take raises awareness about blood clots and helps save lives.

You can choose to walk, run or roll a distance of one mile, 5K, or 10K anytime between October 11-14. However you choose to move, your participation matters. Let's come together to prioritize our health, spread the word about blood clot prevention and treatment, and raise funds to support NBCA’s awareness and education programs.

🗓 Event Dates: October 11-14

📍 Location: Virtual

🔗 Sign Up Today: Link in bio.

#stoptheclot #worldthrombosisday #bloodclots #funrun #charityrace #virtualrace #bloodclotawareness #bloodcloteducation #bloodclotevent #bloodclotprevention

Spending time in the hospital is always a challeng

Spending time in the hospital is always a challenge. The last thing you need is another health problem or setback on your road to recovery.

It is important to know that being in the hospital places you at increased risk for the development of a deadly blood clot, particularly if you’re dealing with surgery, a physical trauma, or a serious illness like cancer.

Dr. Elliott Haut of Johns Hopkins Medicine joins us for our October PEP Talk on hospital-associated risk factors including prolonged immobility, surgery, or other medical treatments and how you can protect yourself.

We hope to see you there! Register at the link in bio.

#stoptheclot #peptalk #bloodclots #hospitalassociatedbloodclots #knowyourrisk #livewebinar #bloodclotawareness #bloodcloteducation #bloodclotprevention

Today is National Video Games Day, but before you

Today is National Video Games Day, but before you immerse yourself in your favorite game, make sure you are aware of your risk for blood clots.

Sitting and playing video games for extended periods of time, generally more than four hours, is a significant risk factor for blood clots in your legs (deep vein thrombosis or DVT), which can lead to a pulmonary embolism (PE), or a blood clot in the lungs, which is life-threatening.

Research has shown that people with no additional risk factors other than prolonged physical inactivity have developed “gamer’s thrombosis.” The risk is even higher in people with additional risk factors, including smoking, obesity and genetic conditions.

Please share this post as a reminder to stand up, walk around, and get that blood flowing every hour or so!

Learn more about your risk for blood clots at the link in bio.

#stoptheclot #nationalvideogamesday #gamersthrombosis #videogames #deepveinthrombosis #pulmonaryembolism #knowyourrisk #bloodclotawareness #bloodcloteducation #bloodclotprevention

The New York Marathon is less than two months away

The New York Marathon is less than two months away and training for Team Stop the Clot runners is in full swing! As the November 3 race date draws near, we’re showcasing each of the remarkable individuals who will run the iconic 26.2 miles in support of NBCA.

Dr. Richard Baum is an interventional radiologist at Brigham and Women’s Hospital in Boston and he’s also a marathon veteran — he has run the Boston Marathon five times in the last seven years.

“I treat thrombosis and thromboembolism patients almost every day in my clinical practice. This topic is near and dear to my heart. I am fully aware of the impact and suddenness this diagnosis can have, and I’m running to raise awareness.”

Support Richard’s marathon fundraiser for NBCA at the link in bio.

#stoptheclot #nycmarathon #nycmarathon2024 #bloodclots #bloodclotsurvivor #bloodclotpatient #anticoagulants #pulmonaryembolism #pe #pesurvivor #bloodclotawareness

Pulmonary embolism is the third leading cause of B

Pulmonary embolism is the third leading cause of Black maternal mortality in the U.S. Research shows that many of these deaths are linked to C-sections. Black women are more likely to give birth by C-section than any other racial group.

The National Blood Clot Alliance stands with the Black Mamas Matter Alliance and other Black maternal health advocates to shine a spotlight on these inequities.

We are attending the Black Maternal Health Conference and Training Institute to spread awareness of life-threatening blood clots among pregnant and postpartum Black mothers.

Use the checklist at the link in bio to assess your risk for blood clots during pregnancy and postpartum.

#stoptheclot #BMHC24 #BlackMamasMatter #blackmaternalhealth #healthinequities #knowyourrisk #bloodclotawareness #bloodcloteducation #bloodclotprevention @blackmamasmatter

"I had an appointment with my PCP on October 5, 20

"I had an appointment with my PCP on October 5, 2019 for shortness of breath. I could barely walk to my car from his office door. My lower legs were hurting. I was 56 and on no medications. He referred me to a cardiologist.

The following day, after my morning coffee, I could hardly walk. I noticed my left leg to be super hot and red with some swelling.

I called my PCP’s office and a nurse picked up. She asked me if I thought I could drive. I said yes. (Don’t do this, by the way.) She told me to go to the ER immediately. I went to a small hospital in the town where I lived.

The ER doc Immediately did bloodwork, including a D-dimer test. It came back indicating that I likely had a DVT, which he expected after looking at my leg.

He wanted to scan my heart and lungs just to be sure, so off I went to imaging. Honestly, I was feeling pretty well, except for the shortness of breath. The pain in my legs had subsided a bit.

The ER doctor returned, and he did not have a good poker face! It scared me.

Doc said, “You have multiple, bilateral pulmonary emboli. You have minutes.” And, he knocked on the door, which was a signal to the care team outside. Four people were on me like bees on honey!

As he continued on, he asked: “Have you been throwing up blood? Have you had any pain in your chest?”

“No,” I said.

He continued, “Your vitals are all good. This is amazing, because you never see that.”

I spent five days in the ICU. I didn’t exactly have the best follow-up care, but I ultimately landed with a great hematologist!

I experienced PTSD, but thankfully my new PCP recognized it and I got help.

In terms of risk factors, I have prothrombin factor II and my hematologist suspects both of my sons have it as well.

My advice to others is research, research, research, and do genetic testing if your doctor recommends it."

Read more stories at the link in bio.

#stoptheclot #stoptheclotstory #bloodclots #pulmonaryembolism #pe #deepveinthrombosis #dvt #prothrombinfactor2 #bloodclotsurvivor #bloodclotawareness #ptsd

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