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September 2017

September e-Newsletter | Listen to the Rhythm of Your Heart

Just like knowing your personal risk factors for blood clots, it is important to recognize if …

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PEP Survey (002)

Survey: Blood Clot Patients Report Gaps in Education and Support From Doctors

Thank you to the 1,050 blood clot patients who participated in our online survey in May and June of this…

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NBCA Presenting at Conference For Women Legislators

The National Blood Clot Alliance (NBCA) is honored to be presenting for the first time at the National Foundation for…

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NBCA works to advance blood clot awareness, prevention, diagnosis & successful treatments to #stoptheclot.

Deion Sanders’ struggle with deep vein thrombosi

Deion Sanders’ struggle with deep vein thrombosis, or blood clots in his legs, is highlighted in the second episode of the latest season of his Amazon Prime documentary series, @CoachPrime.

In the episode, which became available last Wednesday, Deion’s team, the University of Colorado Buffaloes, is getting ready to face a rival team. Amidst the practices and pep talks, the episode shows Sanders’ recovery from DVT surgery.

Using a knee scooter, Sanders enters a room where the team is gathered. He holds up two pins that doctors had removed from his toes days before.

“I might not ever dance like I once did, but normalcy is what I’m chasing. What are you chasing?” he asks the players.

Spoiler alert: The Buffaloes win the game!

Coach Prime is available to stream on Amazon Prime (subscription required). Have you watched the episode?

#stoptheclot #coachprime #deionsanders #primevideo #amazonprime #dvtrecovery #dvtsurvivor #bloodclotrecovery #deepveinthrombosis #football #ColoradoBuffaloes #coloradoBuffaloesFootball #GoBuffs #CUBoulder #BeBoulder #PEPTalk

"In February 2019, I had surgery to remove a benig

"In February 2019, I had surgery to remove a benign bone tumor in my sacrum, a triangular bone that connects the spine to the pelvis. An IV was placed in my right arm prior to the procedure, but I noticed they had switched the IV site to my left arm when I woke up from anesthesia.

My right arm progressively became more sore over the next few days, and on day four I visited an emergency department. My right arm was swollen, red, and hot to the touch. It also hurt worse than my back did post-surgery. An ultrasound confirmed a DVT in my right arm. I ended up taking Xarelto for six months and switching to a non-estrogen based birth control pill as a result.

In 2022, I had an IV placed in my left forearm prior to an MRI. Pain and redness followed a few days later along with a hard, cord-like feeling just beneath the skin. An ultrasound confirmed thrombophlebitis, an inflammatory process that causes blood clots to develop.

After reviewing my history during a routine appointment, my OB/GYN questioned if I had ever been tested for a blood clotting disorder. She referred me to the hematology/oncology department to investigate further. Results of the blood tests revealed heterozygous factor V Leiden. My other risk factors were hormonal birth control and surgery.

I have since had thrombophlebitis again following an IV placed for an MRI this past September. Because IVs have provoked all of my blood clots thus far, I make sure to inform nurses of my factor V prior to placing them. After having this information, they typically take more precautions with me (e.g., using ultrasound to place IVs, following up to make sure I don’t have symptoms of another clot).

While having a genetic blood clotting disorder isn’t what anyone wishes for, I feel very fortunate to know there’s a cause for my recurring clots. I’ll be able to do what I can to help prevent them in the future.

My advice to others is to be vigilant and watch for signs of a clot after any medical procedure."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #thrombophlebitis #dvt #deepveinthrombosis #bloodclots #factorvleiden #bloodclottingdisorder #bloodthinners #anticoagulant

The blood clot patient voice will have a presence

The blood clot patient voice will have a presence among more than 25,000 clinicians and scientists attending the 65th American Society of Hematology (ASH) Annual Meeting and Exposition in San Diego, CA from December 9-12, 2023.

The National Blood Clot Alliance will be advocating on behalf of blood clot patients as well as reporting on the latest advancements in hematology and any developments that are of interest to the patient community. Follow along on X: @stoptheclot

See the link in bio for more info.

#stoptheclot #ASH23 #hematology #hematologyconference #hematologyresearch #bloodclots #bloodclotadvocacy #bloodclotawareness #patientvoice

Thank you to the 1,050 blood clot patients who par

Thank you to the 1,050 blood clot patients who participated in our online survey in May and June of this year about the blood clot patient experience. This was the first large-scale, international survey capturing patient experiences and gaps in care before, during and after a blood clot diagnosis.

Because of your participation, the more than 25,000 clinicians and scientists attending the American Society of Hematology Annual Meeting and Expo this weekend will have the opportunity to learn how health care providers can improve the medical care that blood clot patients receive.

Dr. Rushad Patell, hematologist at Beth Israel Deaconess Medical Center and co-chair of NBCA’s Council of Emerging Researchers in Thrombosis, led the survey and will share the findings at the #ASH23 Meeting and Expo poster session on Monday, December 11, 2023, from 6-8 p.m.

Highlights of the survey:

- 35 percent reported that they didn’t receive the correct diagnosis the first time they sought treatment
- 50 percent had at least three health care visits before they were correctly diagnosed
- 93 percent received information verbally about their diagnosis
- 65 percent of respondents reported that the discussion about blood clots upon diagnosis lasted less than 10 minutes.
- 55 percent felt their diagnosis was explained to their satisfaction.
- 16 percent of respondents received printed or electronic information on blood clots at the time of diagnosis.
- 97 percent were treated with anticoagulation, but only 48 percent recall being provided with specific information about the medication, including risks and benefits.

Thank you again to everyone who took part in the survey. You are helping to amplify the patient voice and improve future patient care!

Read more at the link in bio.

#stoptheclot #patientseducatingproviders #bloodclotsurvey #vtesurvey #bloodclotresearch #vteresearch #gapsincare #healthequity #patientvoice #hematology

"In May of this year, I began to feel bloated and

"In May of this year, I began to feel bloated and my stomach area became distended. It was very uncomfortable. Shortly after, I started feeling upper left quadrant pain.

I continued on for a day or two feeling increasingly worse. Finally, I went to the ER. They did blood work and an ultrasound of my right side, even though I said my pain was localized to the left side. They saw nothing. They sent me home believing I was having gastro issues.

I went the rest of the day and all night feeling sick. I couldn't sleep because of the pain. It felt like I needed to use the bathroom, but couldn't go.

By 5 a.m. I could no longer take the pain, which had also started in my left shoulder area. I went back to the ER, hysterical. They did more blood work and a CT scan. They found multiple wedge shaped splenic infarcts. I could tell they were taking this more seriously now.

They admitted me and ended up doing more scans and found an abdominal aortic thrombus. I was told how rare this is, especially for a 45-year-old, and that I am lucky to be alive.

This took a huge toll on my emotional health. It caused significant anxiety. I thought every little thing that I felt in my body was another clot. I would worry I would go to sleep and not wake up. I’m now on anxiety medication which helps a lot.

I continue to see multiple doctors. I will be on blood thinners for life. They have not found any clotting issues that would have caused this to happen.

In terms of risk factors, I am a smoker and I had COVID several months before, but I don't think I'll ever know definitively what caused this.

I feel very lucky that part of the blood clot broke off and went to my spleen which was actually what caused my pain. Otherwise I would have not known and the outcome could have been very different."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #splenicinfarcts #abdominalaorticthrombus #bloodclots #bloodthinners #anticoagulants #misdiagnosed

NBCA is returning as an official charity partner o

NBCA is returning as an official charity partner of the TD Five Boro Bike Tour hosted by Bike New York!

“On Sunday, May 5, cyclists of all skill levels will come from around the world to roll through every borough of New York City on streets totally free of cars. For one day, the roads are yours, the bridges are yours, the City is yours – there’s no better way to experience NYC.”

Applications are now being accepted to join Team Stop the Clot, and only four bibs remain! Learn more and apply at the link in bio.

#stoptheclot #teamstoptheclot #TDFiveBoroBikeTour #BikeNewYork #nyccycling #bicycling #bloodclotawareness #bloodclotprevention #charityride

Pregnancy is a major risk factor for the developme

Pregnancy is a major risk factor for the development of dangerous blood clots. Women who are pregnant or who have recently given birth are at increased risk for up to three months after the baby is born.

It’s important to be aware of the signs and symptoms of blood clots, which can include pain, swelling, discoloration and warmth in the arms or legs as well as chest pains, shortness of breath, coughing up blood, and a rapid heart rate.

To prevent blood clots, women who are pregnant or have recently given birth should move every 1-2 hours, stay hydrated and take action if you notice any signs or symptoms of blood clots.

Read more at the link in bio.

#stoptheclot #bloodclots #womenandbloodclots #knowyourrisk #bloodclotriskfactors #postpartum #bloodclotawareness #4thtrimester #newmomtips

"I had my first deep vein thrombosis when I was 18

"I had my first deep vein thrombosis when I was 18. I was training for the military and was very active, doing lots of weightlifting and running.

One day, I had extreme pain and swelling in my groin and right leg. Even with those symptoms, I was stubborn and waited four days before getting it checked out.

A large DVT was discovered in my leg, and thankfully they were able to put in a stent. I spent seven days in the ICU being treated and recovering.

I was diagnosed with factor V Leiden heterozygous and webbed veins, and these conditions likely caused the DVT. My recovery was tough. I could barely walk without needing a break from the pain. In addition to that, I struggled immensely with what I found out later was depression and anxiety. I had several panic attacks from the thought of having another DVT and struggled with not being as active as I once was.

After six months, I was able to start being active. I began at the complete bottom, walking laps in my apartment complex and lifting light weights. I also was able to start mentally recovering from the DVT and coping with how much my life would need to change. I had to stop contact sports and some other things I enjoyed.

I did have a reoccurrence after about a year when I was taken off thinners, but was immediately placed back on thinners for life.

Over the next 10 years, I was able to recover most of my physicality and have been mentally processing the event.

Putting my health first has helped a lot. I lift weights to deal with my issues as well as hike on a regular basis. I have also done therapy sessions.

In terms of family history, I've learned my sisters have factor V Leiden and that my grandpa may have died from complications related to blood clots.

My advice to others is to make your health a priority and be diligent about following up on it. Also, do not be afraid to talk to someone if you need to."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #dvt #deepveinthrombosis #athlete #military #bloodclotsurvivor #bloodclotawareness #bloodthinners #FVL #FactorVLeiden #mentalhealth #healthanxiety

The United Airlines NYC Half Marathon returns to N

The United Airlines NYC Half Marathon returns to New York City on Sunday, March 17, 2024, and the National Blood Clot Alliance is returning as a charity partner!

Help support blood clot awareness by running the 13.1 miles on Team Stop the Clot. Applications are now being accepted, but hurry! Only two bibs remaining. Apply at the link in bio!

#stoptheclot #teamstoptheclot #UnitedNYCHalf #halfmarathon #nychalf #nychalfmarathon #nyrr #bloodclotprevention #bloodclotawareness

"I had given birth via C-section, and my daughter

"I had given birth via C-section, and my daughter was sent to the neonatal intensive care unit at a different hospital. My legs were swollen for a couple of days after giving birth, but I figured it was normal since they pumped me with so many fluids when I was in labor and delivery.

Six days went by and my swelling hadn’t gone down, so I went to my OB/GYN clinic to ask if it was normal and they said yes. They gave me the okay to go to the hospital an hour away, where my daughter was.

I didn’t think much of the swelling, other than the fact that my legs felt super tight and my toes felt like there was thread wrapped around them. My cousin became worried and kept pushing for me to get checked at the emergency room to see if I maybe had preeclampsia. Since we were already at the hospital to see the baby, we figured that I might as well go to the same ER.

We were there for a total of 12 hours. They did a CT scan, X-rays, blood work, urine sample, and an ultrasound. I had never gotten so many tests done, so internally I was freaking out. Finally, they diagnosed me with a DVT in my right thigh, and thankfully it was caught early.

They admitted me for observation. I got started on enoxaparin, and my life changed dramatically. I had to be super careful because I was at risk for bleeding or bruising.

It's so sad to me that my OB/GYN failed me and was so dismissive because it could have become a life-threatening situation had I not gone to the ER. I’m now on shots twice a day, every day, for a total of three months, and then afterward comes testing to see if this is genetic or just because of giving birth.

Please let this be a lesson to never ignore your health, especially if something seems off."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #postpartum #pregnancy #childbirth #dvt #deepveinthrombosis #misdiagnosed #bloodclotsurvivor #bloodthinners #anticoagulant

Today is International Day of Persons with Disabil

Today is International Day of Persons with Disabilities. According to the Centers for Disease Control and Prevention, 12.1 percent of adults in the United States live with a mobility disability, which can increase the risk for developing life-threatening blood clots.

If you are a person with a mobility disability, you can reduce your blood clot risk by moving your legs (or asking someone to move them for you) every two to three hours, changing your position often (lying, to sitting, to standing if possible), and wearing loose-fitting clothing. Also, ask your doctor if wearing compression socks could be an option, which can improve blood flow.

Learn more at the link in bio.

#stoptheclot #idpwd #disabilityawareness #bloodclotawareness #bloodclotprevention #mobilitydisabilities #compressionsocks @aahealthdisability

NBCA Community Thrombassador @hanlipton had just g

NBCA Community Thrombassador @hanlipton had just given birth to her first child when she noticed redness and soreness in her inner thigh. She was diagnosed with deep vein thrombosis and later, pulmonary emboli. She tells her heartwrenching story on the Birth Trauma Mama podcast.

“I have a tear, I have a breastfeeding relationship that’s not working, and now I’m afraid I’m going to die,” Hannah said. “I had blood clots, which can be life-threatening if they break off and travel, and so I was overwhelmed with emotion.”

Listen at the link in bio.

#stoptheclot #postpartum #knowyourrisk #pregnancy #childbirth #womenandbloodclots #birthtrauma #birthtraumamamapodcast

Direct oral anticoagulants (DOACs) pose a bleeding

Direct oral anticoagulants (DOACs) pose a bleeding risk for patients, but a new, safer treatment option is emerging that showed a 67 percent lower risk for bleeding during clinical trials.

Abelacimab, a novel factor XI inhibitor taken subcutaneously once a month and manufactured by Anthos Therapeutics, is far less likely to lead to major and nonmajor clinically relevant bleeding than the standard of care DOAC in patients at moderate-to-high risk of stroke who have atrial fibrillation, according to the full results of the phase II AZALEA-TIMI 71 trial.

AZALEA-TIMI 71 made headlines in September when it was stopped early due to what was said to be an “overwhelming reduction” in bleeding with both the 150-mg and 90-mg doses of abelacimab.

Compared with patients on the standard of care DOAC, patients taking the 150-mg dose of abelacimab also experienced a 93 percent reduction in major GI bleeding.

“These groundbreaking results not only support the superior safety of abelacimab as compared with a commonly used DOAC, but also strongly supports the promise of factor XI inhibition as a paradigm-shifting treatment approach,” said Christian T. Ruff, MD, MPH, senior investigator of the study.

Read more at the link in bio.

#stoptheclot #abelacimab #anthos #afib #atrialfibrillation #doacs #bloodthinners #anticoagulants #bleeding

“I am a trail runner, CrossFitter, MMA/jiu jitsu

“I am a trail runner, CrossFitter, MMA/jiu jitsu player, and mountaineer. I trained hard, ate clean, and slept enough so that I could maximize both my performance and longevity. I was a hybrid athlete balancing strength and endurance.

Then I twisted my knee at jiu jitsu camp. I needed a meniscus repair, which caused massive fully occluding blood clots the length of my leg. It swelled to twice its normal size and turned purple. The clots caused three pulmonary emboli that damaged my lungs, but the full extent isn’t yet clear.

I am normally comfortable with pain. I can run for miles in the Alps and take a punch in Muay Thai. But this pain was beyond what I knew existed. Standing up made me feel like I would throw up or pass out from the agony. I would have happily amputated the leg were that the only solution.

In terms of risk factors, I am factor V Leiden homozygous. I have not yet been able to return to any of the activities that make life worth living. All of my friends are off running/lifting/rolling/climbing while I’m stuck immobile at home, so it has had a big impact on all aspects of my life. Every day since the clots has been harder than any day before them.

My heart kept beating, but barely. I'm not out of the woods yet. I'm thankful to have a family and resources to get me through this. I have survived so far despite long odds due to my family and friends and medical team. I have no idea how anyone could get through this alone.

So what can I do about it now? I have been writing about my experience and raising money for the National Blood Clot Alliance. I have not cancelled planned mountain expeditions starting next June, so I have something to look forward to and live for. Now I put one foot in front of the other as I rebuild my health and my life.

My advice to others is to reach out to other survivors. It can feel isolating, but many others have gone through this.”

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #factorvleiden #bloodclottingdisorder #pulmonaryembolism #pesurvivor #deepveinthrombosis #dvtsurvivor #crossfit #enduranceathlete #MMA #jiujitsu #meniscusrepair

@TatyanaMcFaddenUSA knew something was wrong when

On behalf of the National Blood Clot Alliance (NBC

On behalf of the National Blood Clot Alliance (NBCA), we are extending our deepest gratitude for your support on #GivingTuesday.

Your generosity has surpassed all expectations, and we are thrilled to share that, together, we raised $17,389—more than three times our original goal! This achievement is a testament to the power of our community coming together to Stop the Clot!

Your contributions will play a pivotal role in spreading blood clot awareness nationwide, and providing crucial support and resources to blood clot patients like “miracle man,” Ted.

On behalf of Ted, and approximately two million individuals who turn to NBCA each year for blood clot information and support, THANK YOU!

#stoptheclot #givingtuesday #thankyouwednesday #generosity #nonprofits #donate #bloodclotprevention #bloodclotawareness #fundraising #advocacy #thrombectomy #DVT #PE #bloodclotsurvivor #PEsurvivor

"I remember how excited I was. I was five months p

"I remember how excited I was. I was five months pregnant with my son. I had just started feeling him kick and move and I was busy planning the nursery, clothes, pictures, and working.

When I left work on a Friday, my left leg was heavy and I was dragging it. Over the weekend my leg and foot became swollen, and there was indescribable pain in my groin and back.

My OB/GYN was out of town, so I saw another doctor who diagnosed me with a kidney infection. By that point, I was in so much pain that I couldn’t walk and had to use an office chair or be carried.

I saw my doctor on the next day, who checked cord blood flow, ordered a venous Doppler, and diagnosed me with blood clots. I was admitted for my first of many hospital stays.

I was placed on heparin and bedrest, preparing for the worst, but hoping for the best. I had weekly ultrasounds to check my son’s cord. Despite that, I delivered my only child 9lbs 8oz, 23 inches. He is now 17.

Through the years, two surgeries to stop excessive bleeding from blood thinner, medical appointments all over the country, and 16 more DVTs, I was so defeated. I developed aFib in 2018, and my doctors and I worked to keep it manageable.

In July of 2021, at 40 years old, I developed the worst pain I’ve ever felt in my chest. As a nurse, I made up all kinds of excuses. The next morning I went to the ER and learned I was in the middle of a serious heart attack. A two-inch clot was stuck in my left ventricle..."

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

#stoptheclot #stoptheclotstory #deepveinthrombosis #factorvleiden #proteincdeficiency #proteinsdeficiency #polycythemiavera #bloodclottingdisorder #bloodclotawareness

UPDATE: Thanks to our amazing blood clot community

UPDATE: Thanks to our amazing blood clot community, we’ve almost reached our stretch fundraising goal of $10,000 for #GivingTuesday!

We’re SO close. Will you help us hit our $10,000 goal?

NBCA Board Vice President Julie Partridge shared why she supports NBCA on Giving Tuesday:

“NBCA was a lifeline for me in my recovery from a massive pulmonary embolism.”

Thank you, Julie! To join Julie in helping us meet our $10,000 goal, please donate here using the blue button above or at the link in bio.

#stoptheclot #givingtuesday #generosity #nonprofits #donate #bloodclotprevention #bloodclotawareness #fundraising #advocacy

Exciting Update! Together, we've reached our $5,00

Exciting Update! Together, we've reached our $5,000 fundraising goal, thanks to your incredible support! But why stop there? Let's aim higher together! Our new Giving Tuesday target is $10,000, and we know with your generosity, we can make an even bigger impact.

Every donation is 100% tax-deductible and every dollar counts!

To celebrate this achievement and kick off our new goal, we're sharing an UNselfie from one of our dedicated board members, Arshell. Her commitment to NBCA after the untimely passing of her daughter is truly inspiring.

Here's how you can join the movement:

1. Donate via the link in bio

2. Share your UNselfie: Take a photo of yourself letting us know why you support NBCA on Giving Tuesday, and challenge your friends and family to join you! Download at the toolkit link in bio.

3. Spread the word: Share this post, tag friends, and help create an even larger ripple effect of change in 2024!

Thank you!

#stoptheclot #givingtuesday #generosity #nonprofits #donate #bloodclotprevention #bloodclotawareness #fundraising #advocacy

If you’ve donated to NBCA for #GivingTuesday, le

If you’ve donated to NBCA for #GivingTuesday, let the world know and inspire others to do the same!

Here’s how it works: Take a selfie and use hashtags #StopTheClot, #UNselfie, and #GivingTuesday. OR download the Giving Tuesday #UNselfie template (link in bio) print it, write your reason for giving on the template, and take a selfie holding it.

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

If you haven’t donated yet, now is the time! Make a donation using the link in bio, then share your UNselfie.

Let’s create a ripple effect to collectively #StopTheClot in 2024!

Please donate now at the link in bio ❤️

#stoptheclot #givingtuesday #generosity #nonprofits #donate #bloodclotprevention #bloodclotawareness #fundraising #advocacy

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