Blood clots in Children

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Blood Clots in Children Resources

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Blood Clots in Children Neil A. Goldenberg, MD, PhD

Professor of Pediatrics and Medicine
Division of Hematology
Johns Hopkins University School of Medicine
Baltimore, MD, USA

Founding Director, Pediatric Thrombosis & Stroke Programs
Johns Hopkins All Children’s Hospital
St. Petersburg, FL, USA

(Updated October 2024)

Venous Thromboembolism in Children and Young Adults: State-of-the-Art in Diagnosis, Treatment, and Prevention Webinar

Presented by NBCA’s MASAB member Neil A. Goldenberg MD, PhD, Director, Thrombosis Program and Director of Research, Johns Hopkins All Children’s Hospital, and Associate Professor of Pediatrics, Division of Hematology, Johns Hopkins University School of Medicine.

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"In Dec 2022, I had the worst pain in my left side

"In Dec 2022, I had the worst pain in my left side of my buttocks after working out. Being a physical therapist and a retired figure skater, I assumed I had strained a muscle until I was unable to walk or bear weight on my left leg.

After three ER visits, I was finally diagnosed with a massive DVT that extended from my left groin to right below my heart, a collapsed left iliac vein, and multiple clots in my left lung.

ER doctors initially signed it off as a muscle strain and anxiety. I knew something was horribly wrong and refused to leave the hospital during the third visit. I was in the ICU with heparin and tissue plasminogen activator (iPA) and the clot did not decrease in size. I had an emergency thrombectomy and later a stent was placed to keep my left iliac vein open.

We learned my clots were caused by four things: Factor II deficiency clotting disorder, birth control, May-Thurner syndrome, and a suspected previous injury to my iliac vein from a prior heart procedure. I have no family history of clotting disorders.

Doctors said I’m lucky to be alive because they believe my clot started about 10 years before it was found. I had no symptoms until it became a crisis. I’m blessed to be alive. I am thankful for my workout class and my medical team that saved my life. God’s not done with me here.

I will be on blood thinners for life and have close monitoring to ensure I don’t clot again. As a healthcare worker, I’m a strong advocate for my patients regarding blood clot education and have used my story to educate my peers about blood clots and disparities in the diagnosis of clots. I was a 32 year old healthy female and was initially overlooked due to my age and good health.

I’m so thankful for NBCA and all they do to advocate and educate as they greatly helped me in my lifelong journey of being a #bloodclotsurvivor. I wear my Stop the Clot pin proudly on my work badge now.

You are your best advocate and it’s possible to live an active and healthy lifestyle after clots. You are not your diagnosis, it just is a part of your story."

#stoptheclot #stoptheclotstory #vte #bloodclots #factor2 #maythurnersyndrome #mts #dvt #pe #birthcontrol #misdiagnosed

HAPPENING TONIGHT: Join us tonight at 7 p.m. ET fo

HAPPENING TONIGHT: Join us tonight at 7 p.m. ET for our November PEP Talk on post-thrombotic syndrome (PTS), chronic thromboembolic pulmonary hypertension (CTEPH) and chronic thromboembolic disease (CTED).

Dr. Timothy Fernandes, pulmonologist with UC San Diego Health, will be with us to discuss how to manage these conditions.

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

#stoptheclot #bloodclots #vte #cted #pts #postthromboticsyndrome #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

HAPPENING TOMORROW: Join us for our November PEP T

HAPPENING TOMORROW: Join us for our November PEP Talk on Tuesday, November 12 at 7 p.m. ET as we explore long-term health conditions that can occur after a DVT or PE.

Dr. Timothy Fernandes, pulmonologist at UC San Diego Health, will share insights on managing post-thrombotic syndrome (PTS), chronic thromboembolic pulmonary hypertension (CTEPH) and chronic thromboembolic disease (CTED).

There is still time to register! We hope to see you for this informative session.

📅 Date: Tuesday, November 12

🕖 Time: 7 p.m. ET

💻 Where: bit.ly/Nov2024PEPTalk

#stoptheclot #bloodclots #vte #cted #pts #postthromboticsyndrome #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

On this Veteran’s Day, Stephanie “Jersey” Ma

On this Veteran’s Day, Stephanie “Jersey” Martinez gives a glimpse into her life as a former active duty service member, wife, mother, Thrombassador, NBCA staff member, and passionate blood clot awareness advocate.

Did you know that military personnel and veterans are at an increased risk for blood clots?

Several factors contribute to this elevated risk, including:

1. Injuries and surgeries: Combat-related injuries, surgeries, and prolonged immobility during recovery can increase clotting risk. These events often result in damage to blood vessels or periods of immobility, both of which are key risk factors.

2. Immobilization and long travel: Veterans often endure long travel times or may experience periods of restricted mobility, which are known to increase the risk of clots.

3. High levels of physical and emotional stress: Stress and conditions like post-traumatic stress disorder (PTSD), which is more common among veterans, can contribute to inflammation, which raises the risk for blood clots.

4. Underlying health conditions: Higher rates of hypertension, diabetes, and other cardiovascular issues in the veteran population can compound clotting risk.

Increased awareness among veterans and their healthcare providers is critical, as early detection and intervention are essential in preventing serious complications from blood clots.

#stoptheclot #stoptheclotstory #bloodclots #vte #dvt #deepveinthrombosis #ijvt #jugularclot #bloodclotawareness #bloodclotprevention #bloodclotsurvivor #bloodclotstory

In honor of Veteran’s Day, we’re sharing the b

In honor of Veteran’s Day, we’re sharing the blood clot survival story of Stephanie “Jersey” Martinez, development and outreach coordinator at the National Blood Clot Alliance and a U.S. Navy veteran.

“On Nov. 17, 2021, I had a right knee arthroscopy, an outpatient procedure that only took only 15 minutes. I was told I would be back walking in two to three weeks. However, my healing time would be severely prolonged.

Two days after my procedure, I began having a painful charley horse in my right calf muscle. A day after the pain began, I started to see discoloration and swelling in my leg. I went into the ER and had an ultrasound, which showed that I had a blood clot, or deep vein thrombosis, in my right tibial vein, which is in the shin area.

I was sent home on rivaroxaban. A day later, I began to have pain, weakness, and swelling in my left arm. My face was also tingling and I knew something wasn’t right. I went back to ER and was told that I seemed fine and I should just go home. I refused and said, ‘No, please check!’

The hospital then performed an ultrasound on my upper left extremity and discovered a second clot within my left internal jugular. The doctor who almost sent me home was very apologetic and said I needed to be admitted immediately and put on a heparin drip. I found out that if had I listened to her initial suggestion, I could have gone home and died that night.

They were shocked that I had two clots at the same time, with one being in a dangerous and rare location given my age. I’ve been told by many doctors that my situation shouldn’t have happened from a 15-minute procedure, but it did.

In 2023, after many hospital visits, genetic testing, heart ECHOs, brain and CT scans, and MRIs, the cause is unknown and considered unprovoked. The clot in my tibial vein dissolved, but the DVT in my left internal jugular is chronic and still present. I am now on blood thinners indefinitely.

This situation changed my life, as I was super healthy before this. I was a personal trainer and nutrition coach for 7 years. However, I now see health in a new way. I achieved my Master’s Degree in Health Promotion so I can help bring a change to our community.”

If you’ve experienced a pulmonary embolism, or a

If you’ve experienced a pulmonary embolism, or a blood clot in the lungs, watch out for these signs of chronic thromboembolic pulmonary hypertension, or CTEPH. You might have CTEPH if you notice any of these symptoms, even if you haven’t been formally diagnosed:

Common symptoms of CTEPH include:

- Shortness of breath, especially when exercising
- Chest pain or tightness
- Tiring quickly, especially when active
- Swelling in the legs, ankles, or abdomen
- Dizziness, lightheadedness, or fainting
- Feeling the heart pounding in the chest
- Coughing up blood
- Discoloration of the fingers and toes

If these symptoms sound familiar, speak with your healthcare provider about options for managing CTEPH and attend our next PEP Talk on Tuesday, Nov. 12 at 7 p.m. where we’ll discuss CTEPH and other long-term conditions that can occur after a blood clot. Register at the link in bio.

#stoptheclot #bloodclots #vte #cteph #pts #postthromboticsyndrome #cted #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

Did you know that pulmonary embolism survivors are

Did you know that pulmonary embolism survivors are at risk for long-term conditions that can affect quality of life?

Studies suggest that 3-5% of patients with a history of PE may develop chronic thromboembolic disease (CTED). Unlike chronic thromboembolic pulmonary hypertension (CTEPH), which involves elevated pressure in the pulmonary arteries, CTED involves chronic blockage without increased pulmonary pressure.

If you experience any of these symptoms, you should see your healthcare provider for diagnosis and treatment:

- Shortness of breath, which may worsen during physical exertion
- Feeling fatigued quickly, especially after exercising
- Chest pain or tightness
- Dizziness, lightheadedness, or fainting
- Swelling in the legs, ankles, or abdomen
- Heart palpitations, or the feeling of the heart pounding in the chest

To learn more, attend our next PEP Talk on Tuesday, Nov. 12 at 7 p.m. where we’ll discuss CTED and other long-term conditions that can occur after a blood clot. Register at the link in bio.

#stoptheclot #bloodclots #vte #cted #pts #postthromboticsyndrome #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

"On July 12, 2024, I started to have the worst hea

"On July 12, 2024, I started to have the worst headache I have ever experienced. I was nauseous and had blurry vision on and off, and I felt like one of my eyes was about to pop out of my face.

I went to the ER twice. Both times they treated me with the 'migraine cocktail' that did absolutely nothing. I was in so much pain all I could do was cry. They didn’t believe my pain and kept assuming I wanted stronger meds because I wanted to abuse them.

When I went to the ER for the second time, I demanded that they give me a CT because there had to be something wrong. Immediately, they noticed a 'brain bleed' and transferred me to a larger hospital.

There, we found that it was not a brain bleed but cerebral venous sinus thrombosis (CVST). I had multiple large clusters of blood clots in multiple veins of my brain.

All of the providers were shocked that I was still able to normally walk and talk. I was immediately transferred to the ICU where I spent six long days. We are waiting on the results to determine if I have a clotting disorder.

My life has done a complete turnaround. No more roughhousing with my sons. I’m no longer the loud, fun, life of the party anymore. Life is just pretty boring. I now have to give myself shots twice a day, something I haven’t quite gotten used to yet.

This experience has taught me to advocate for myself at all times. Ask for second opinions and don’t let them discharge you if you don’t feel comfortable with it."

Read more patient stories at the link in bio.

#stoptheclot #stoptheclotstory #vte #bloodclots #cvst #brainbloodclots #bloodclotawareness #bloodclotsurvivor #bloodclotpatient #bloodcloteducation

🏅 Team Stop the Clot Conquers the 2024 NYC Mara

🏅 Team Stop the Clot Conquers the 2024 NYC Marathon!

After months of physical training and diligent fundraising to support NBCA’s blood clot awareness and education efforts, the 17 runners of Team Stop the Clot completed the New York City Marathon on Sunday!

They not only crossed the finish line but also raised nearly $100,000 for VTE awareness and prevention. We couldn’t be prouder!

A huge thank you to our runners, supporters, and everyone who contributed to the team. Your dedication fuels NBCA’s mission to provide life-saving education and resources to those affected by blood clots.

It was a thrill watching our runners zip past us in their red and white polka dots! We hope you enjoy this video of the day, which includes each runner’s reason for joining the team.

If you would like to join Team Stop the Clot in the 2025 NYC Marathon, keep an eye out for our call for applications in January 2025.

Applications to join Team Stop the Clot in the 2025 United Airlines NYC Half Marathon are now open. Find it at the link in bio.

#stoptheclot #teamstoptheclot #bloodclots #vte #nycmarathon #charityrace #charityteam #bloodclotawareness #bloodclotsurvivor

If you’ve experienced deep vein thrombosis, or a

If you’ve experienced deep vein thrombosis, or a blood clot in your leg, watch out for these signs of post-thrombotic syndrome (PTS). You might have PTS if you notice any of these symptoms, even if you haven’t been formally diagnosed:

Common symptoms of PTS include:

- Swelling in the leg (often worse after standing or sitting for long periods)
- Pain, heaviness, or aching
- Skin discoloration
- Itching or tingling in the affected limb
- Varicose veins
- Hardening and thickening of the skin

PTS is a chronic condition that occurs after DVT when blood flow is limited. The good news? Early detection and care can make a difference.

If these symptoms sound familiar, speak with your healthcare provider about options for managing PTS and attend our next PEP Talk on Tuesday, Nov. 12 at 7 p.m. where we’ll discuss PTS and other long-term conditions that can occur after a blood clot. Register at the link in bio.

#stoptheclot #bloodclots #vte #pts #postthromboticsyndrome #cted #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

We applaud @medstarhealth for inviting Leslie Lake

We applaud @medstarhealth for inviting Leslie Lake, our volunteer president at the National Blood Clot Alliance, to participate in their "One Team for VTE" pep rally event for their clinicians and administrators tomorrow on their campus.

Leslie will share her 2018 blood clot survival story, which sparked her advocacy journey. Leslie’s participation underscores MedStar Health’s commitment to integrating patient perspectives into clinical practice. In addition to her personal journey, Leslie will present key NBCA initiatives and patient resources across MedStar's 10 hospitals and over 300 care locations.

This event unites healthcare professionals to enhance VTE prevention, treatment, and patient support strategies, featuring sessions on compression technology, pharmacological treatments, data discussions, and a Q&A. Leslie's story will illuminate the human aspect of these efforts, inspiring attendees to practice and champion patient-centered care.

Together, we’re building a safer future for everyone affected by blood clots.

#stoptheclot #vte #bloodclots #oneteamforvte #bloodclottreatment #bloodcloteducation #clinicianeducation #bloodclotawareness #vtetreatment #vteexcellence

"I was 56 years old and getting ready to go to yog

"I was 56 years old and getting ready to go to yoga class with my daughter, but I was feeling unwell with shortness of breath and a cough.

Given that this occurred during Covid, I assumed I might have Covid or pleurisy. I did not have time to be sick, it was a busy time at work, and I had an important meeting the next day.

I called tele-health and spoke to a nurse. After describing my symptoms, she suggested I monitor them and if I feel worse, go into urgent care or the ER.

About an hour later, my phone rang. It was another nurse from tele-health. She strongly suggested I go to urgent care as she said it could be a blood clot. I thought she was crazy, but ultimately decided I would go and get checked and then come home and get some sleep for my meeting the next day.

My D-dimer test results were elevated and the urgent care doctor suggested I go to the ER to get a CT scan to confirm.

As it turned out, I had a PE and was admitted to the hospital. I was treated and discharged after five days. Five months later, I saw a lung specialist who did all the applicable tests to try and figure out why I had the PE.

A CT scan and VQ scan showed damage to the top third of my left lung. Diagnosis: CTED.

I decided against pulmonary thromboendarterectomy, a surgical procedure that removes blood clots and scar tissue from the pulmonary arteries. I have a great lung specialist whom I see every four months, a supportive daughter, and the surgeons whom I met with (virtually) said my case can be reopened if things change.

I am grateful that the tele-health nurse (and my daughter) encouraged me to go to urgent care, otherwise, things may have turned out differently.

My dad had blood clots, but I was not knowledgeable about them, what caused them, or how to treat them. I joined the NBCA online support group and it provided me with additional information on the disease as well as support from others’ experiences."

Learn about complications that can arise after a blood clot, including post-thrombotic syndrome (PTS), chronic thromboembolic pulmonary hypertension (CTEPH), and chronic thromboembolic disease (CTED) at our November PEP Talk. Register at the link in bio.

Understanding Chronic Thromboembolic Disease (CTED

Understanding Chronic Thromboembolic Disease (CTED)

Did you know that about 30% of people who experience a pulmonary embolism (PE) can develop chronic thromboembolic disease (CTED)? While CTED doesn’t lead to pulmonary hypertension like CTEPH, it can still cause persistent symptoms that disrupt daily life.

In CTED, blood clots remain in the pulmonary arteries, limiting blood flow to the lungs and leading to issues such as:

- Shortness of breath with little exertion
- Fatigue that makes daily tasks challenging
- Chest discomfort or pain
- Reduced ability to exercise

CTED can significantly impact a your quality of life, even with normal lung pressures. It’s essential to manage and monitor this condition carefully.

Want to learn more? Join us for our PEP Talk ONE WEEK from today. We’ll hear from medical experts and patients who will share their insights on diagnosis, treatment, and life after a PE.

📅 Date: Tuesday, Nov. 12

🕒 Time: 7 p.m. ET

💻 Register at the link in bio.

If you or a loved one has had a pulmonary embolism, this webinar is a must! Learn about how CTED differs from CTEPH and discover treatment options that can help improve quality of life.

#stoptheclot #bloodclots #vte #pts #postthromboticsyndrome #cted #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

"I suffered a massive saddle pulmonary embolism as

"I suffered a massive saddle pulmonary embolism as well as multiple smaller PEs, some of which are now chronic, in October 2022. My event was provoked by an unsuccessful vascular ablation that left my great saphenous vein partially open and Covid 19.

Two years later, I still experience intermittent chest tightness and fatigue. After an extensive cardiac workup last year, including right and left heart catheterization, I received a diagnosis of chronic thromboembolic disease (CTED). My pulmonary pressures are borderline and I'm closely monitored by the Pulmonary Hypertension Unit here in Dublin, Ireland.

I have an upcoming CPET test (cardiopulmonary function) to check my pulmonary pressures while under exertion. This will determine if I need to undergo any treatment in Cambridge, UK, as Ireland doesn't have the required medical facilities to treat this chronic condition.

I have my own oximeter and my oxygen saturation averages at 98%. I underwent two surgeries this year under general anesthesia and thankfully, no issues were reported. I'm a rivaroxaban lifer, currently on 20mg which will soon be reduced to 10mg minimum.

I have had severe anxiety and PTSD since receiving my blood clot diagnosis. I'm currently on a three-month medical leave from work because of my mental health.

Unfortunately, this isn't factored into aftercare in this country and you're left to figure it out for yourself. I'm currently working through that. I also struggle with menstruation as I bleed and cramp a lot on rivaroxaban. I have to take tranexamic acid to balance this.

On the bright side, I'm back in the gym with a new personal trainer and my new addiction is Pilates. I also bike and walk as much as I can. I refuse to let this control my life any longer.

I’m alive, healthy, grateful for each day, and passionate about spreading much-needed awareness."

Learn about complications that can arise after a blood clot, including post-thrombotic syndrome (PTS), chronic thromboembolic pulmonary hypertension (CTEPH), and chronic thromboembolic disease (CTED) at our November PEP Talk. Register at the link in bio.

#stoptheclot

It’s finally here! After many months of physical

It’s finally here! After many months of physical training, determination, discipline, and fundraising, Team Stop the Clot runners take on the TCS New York City Marathon TODAY!

Please join us in cheering on these incredible individuals as they race the 26.2 miles in support of NBCA.

Every member of our team has a personal connection to our mission, whether it's through their own experiences or the experiences of their loved ones. They've channeled their energy into something positive to help spread the word about blood clot risks, signs and symptoms and offer support to those affected.

Please leave your words of encouragement in the comments and join us as we cheer them on all the way to the finish line. Go, Team Stop the Clot!

#stoptheclot #bloodclots #vte #nycmarthon #tcsnycmarathon #teamstoptheclot #marathontraining #charityrace #bloodclotawareness #bloodclotsurvivor

Fueling up with new friends and delicious pizza be

Fueling up with new friends and delicious pizza before Team Stop the Clot hits the streets of NYC tomorrow and takes on 26.2 miles in support of the National Blood Clot Alliance! Every step is for awareness, prevention, and those impacted by blood clots. Special shoutout to @snackarmstrong from @bobspizzatour for hosting us and helping our runners fuel up for the big day tomorrow! Let’s go, Team Stop the Clot! #TeamStopTheClot #NYCMarathon #StopTheClot

Have you or someone you know experienced ongoing s

Have you or someone you know experienced ongoing symptoms after a blood clot? Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare but serious condition that can occur after a pulmonary embolism, when blood clots don't fully dissolve, blocking the arteries in the lungs and leading to increased blood pressure. Over time, this can put strain on the heart and cause symptoms such as:

- Shortness of breath
- Fatigue
- Dizziness
- Chest pain
- Swelling in the legs

The good news is that CTEPH is treatable, and early diagnosis can greatly improve outcomes.

Join our PEP Talk one week from Tuesday to hear from experts and patients about CTEPH and other complications that can occur after a blood clots, including chronic thromboembolic disease (CTED) and post-thrombotic syndrome (PTS).

📅 Date: Tuesday, Nov. 12
🕒 Time: 7 p.m. ET

💻 Register at the link in bio.

Don't miss this opportunity to learn more about managing these conditions and improving your quality of life. Please share this event with anyone who might benefit!

#stoptheclot #bloodclots #vte #pts #postthromboticsyndrome #cted #cteph #bloodclotawareness #bloodcloteducation #bloodclotsurvivor #peptalk

"I was 31 weeks pregnant and was feeling very brea

"I was 31 weeks pregnant and was feeling very breathless. I had a routine appointment at the hospital and I was going to cancel as I felt so unwell.

They immediately looked at me and things started to happen very quickly. I had a massive PE with right heart strain. They said if I hadn't come in I would have died within hours.

I was rushed into surgery and was given clot buster drugs, but they didn’t work. I was in the ICU for three weeks. They administered more clot busting drugs. I was getting scans daily and was monitored 24/7. Things were changing daily in what treatments I needed.

I was still doing very poorly and they realized I had an allergic reaction to heparin (heparin-induced thrombocytopenia). All this was happening while my baby was growing inside me.

They told my husband to prepare for them to deliver the baby. My outlook wasn't great so I wrote goodbye letters to my two older children and the baby I was potentially not going to meet for all the special occasions I would miss.

I couldn't have any additional treatment because of the baby. My anxiety was through the roof as all I wanted to do was deliver my baby safely.

I gave birth to Owen in the ICU at 35 weeks. He was healthy and safe, the best possible outcome in a bleak situation.

I was diagnosed with chronic thromboembolic disease (CTED) and a heparin allergy. I still have ongoing care from lots of specialists and I'm on anticoagulants. I struggle to breathe and normal tasks are very challenging.

My advice to others is if something doesn’t feel right, don’t ignore it."

Learn about complications that can arise after a blood clot, including post-thrombotic syndrome (PTS), chronic thromboembolic pulmonary hypertension (CTEPH), and chronic thromboembolic disease (CTED) at our November PEP Talk. Register at the link in bio.

#stoptheclot #VTE #bloodclots #pregnancy #CTED #PE #pulmonaryembolism #bloodclotawareness #bloodclotsurvivor #bloodclotpatient

In case you missed it: Season Two of NBCA’s awar

In case you missed it: Season Two of NBCA’s award-winning podcast, Taking a Breath, is now available!

The new season brings even more inspiring stories from survivors and tributes from families affected by blood clots.

The hosts, NBCA’s President Leslie Lake and Patient Liaison Todd Robertson, invite medical experts into the conversation to provide education and awareness.

Read more and listen at the link in bio.

#stoptheclot #podcast #bloodclots #vte #bloodclotpodcast #bloodclotawareness #bloodcloteducation #healthpodcast #takingabreath #takingabreathpodcast #bloodclotsurvivor

The New York City Marathon is THREE DAYS away, and

The New York City Marathon is THREE DAYS away, and we’re showcasing each of the remarkable individuals who will run the iconic 26.2 miles in support of NBCA.

Meet Rachel Merluza! After turning 40, she realized she needed to make preventive care a priority.

“It was around this time that I spoke to the co-founder of my company, Leslie Lake, about her suffering a bilateral pulmonary embolism and how it came out of nowhere,” Rachel said. “At that time, I had no knowledge of how deadly blood clots could be and that there were preventative measures that could be taken. Since then I have learned more though the National Blood Clot Alliance which has helped my personal awareness.”

Join us in supporting Rachel’s mission to fight blood clots! Every donation makes a difference.

👉 Rachel Merluza's fundraising page for National Blood Clot Alliance at the link in bio!

#stoptheclot #vte #bloodclots #nycmarathon #charityrace #bloodclotawareness #bloodclotprevention #pulmonaryembolism #pe

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