e-Newsletter - July 2016
Advancing the Prevention, Early Diagnosis, and
Treatment of Life-Threatening Blood Clots
A Perfect Prescription for Empowerment: Tell Your Story     

In a recent blog post in The New York Times (NYT),  Letting Patients Tell Their Stories, Dr. Dhruv Khullar, a resident physician at Massachusetts General Hospital and Harvard Medical School, discusses the importance of giving people the opportunity to tell their stories in the face of a medical crisis or ongoing illness. 

As Dr. Khullar explains, physicians are, first and foremost, trained to diagnose and treat health problems. Secondarily, they are trained to provide comfort to patients who may be going through the worst or most frightening ordeal of their lives. All too often, Dr. Khullar suggests, doctors seem focused on treating the patient's physical ailment or condition, as opposed to the patient as an individual or the patient as a whole person. While this type of clinical or physical focus is surely understandable, particularly in light of a life-threatening issue such as blood clot in your lung, it may not always foster the most supportive or trusting physician/patient relationship. 

As this NYT blog post states, "A small but growing body of research [in Britain] has found that allowing patients to tell their life stories has benefits for both patients and caregivers." The research further suggests that providing a biographical account of one's past can help patients not only gain insights into their own needs in terms of care and healing, but can help build better relationships with their physicians by giving doctors a glimpse of the "person behind the patient." By helping to build these relationships between patients and the medical community, patients are made to feel more supported in their journey. 

We at the National Blood Clot Alliance have seen first-hand the positive impact of providing support through sharing patient stories. We began posting stories to our website back in 2013. Today, a growing number of patients reach out to us almost daily seeking to share their stories, while at the same time a growing number of other advocacy organizations now follow this proven NBCA path.  We are proud to be at the forefront of this movement. As a leader in the initiative to share patient stories with the thrombosis community, NBCA has helped to foster and nurture relationships among patients, caregivers, and healthcare professionals alike. 

In fact, patient storytelling is one of the most successful awareness-building tools we work with to improve understanding about blood clot risk factors and signs and symptoms. Our website -- www.stopthclot.org  -- boasts 2+ million page views each year. Among the most frequently visited pages on our website are our patient stories. In addition, this past March, during Blood Clot Awareness Month, we were proud to feature one unique patient story every single day of the month. The response to this NBCA social media effort was overwhelming: Hundreds of thousands of people engaged with us via social media in just a few short weeks.  

Moving forward, NBCA has some exciting new plans for the development and delivery of its patient stories. If you would like to be a part of this new work, please visit our website for more information and to connect with us: Patient Stories. We look forward to meeting you and sharing your story too.   

Paving the Patient Story Way

For many years -- since 2013 -- the National Blood Clot Alliance has featured the stories of individuals affected by blood clots and their caregivers on its website and on social media. 

Each story is unique. Each story is important. Each story has great value for the person who wrote it and the people who read it. 

Our organization's effort to give voice to these individuals has been duplicated by other organizations in the thrombosis community, which shows what a truly important r ole patient stories play. In fact, these individual patient stories are the most frequently visited pages on our website, stimulating thousands of views in just one month. 

We encourage you to contribute to the ever-growing community of patients,
caregivers, friends and family members who have shared their stories by sharing your story with the National Blood Clot Alliance. Every story is important and every story is unique. We want to hear from you.

Share your story today. 

Have you already shared your story with NBCA? You can still make a difference by helping someone else through their recovery from blood clots. Connect with over 700 people who have also experienced a blood clot in our online discussion community. It's free and easy to join.    
Patient Stories: A Look Back & A Look Forward 
Jessica Stadler was the very first patient to share her story with NBCA. Jessica was always active and healthy. However, one day she started feeling fatigued and had no appetite. She experienced chest pain during a routine workout and went to the doctor, who gave her breathing treatments for her pain. Jessica continued to feel worse and her chest pains increased. Her mother took her to the ER where she was admitted for multiple blood clots in her lungs, believed to be caused by taking birth control pills.  

Jessica shares her mission: " My goal is to encourage people, especially young women on hormonal birth control, to recognize that it carries some risk for blood clots, and to seek care should they ever experience any signs and symptoms of blood clot in the leg (deep vein thrombosis or DVT) or blood clot in the lung (pulmonary embolism or PE).  Blood clots are not s omething that can be ignored. I was fortunate that I didn't wait another hour to go to the ER, because I might have experienced a very different outcome."  Read Jessica's story

Since Jessica first shared her story with us, NBCA has shared patient stories from all over the world, including the United States, Canada, England, and Ireland, to name just a few places. The power of these stories to unite and comfort patients, survivors, caregivers, and people facing the loss of a friend of family member is unparalleled in our community. For each patient story that is shared, someone feels less alone and less challenged by their personal experience, and it is evident that sharing these stories establishes new connections that transcend distance and cultural barriers.    

Helen Goulden - an avid recreational cyclist - is the latest patient to share her story with NBCA.  A couple of days after her first multi-day bicycle tour, Helen noticed a sharp pain in her left calf that she convinced herself was a pulled muscle, even though she wondered if it was a blood clot. Helen soon developed pain in her chest and went to the emergency room, but she was sent home because doctors did not think she had a blood clot. Helen pursued a diagnosis with her gynecologist, who sent her for te sting at a different hospital where she was admitted for blood clots in her leg and lung.

Helen shares how NBCA's patient stories impacted her decision to seek care, "Reading the patient stories on the NBCA website has been very helpful for me. In those stories, I felt like I was reading my own story again and again - 'I had pain in my left calf, I thought it was a muscle pull, and then I had pain in my chest.' I would never have had the confidence to pursue a diagnosis without those other patient stories."  Read Helen's story .  

Read more Patient Stories from the National Blood Clot Alliance.       

Community Connection
Save the Date: Saturday, August 13, Peoria, IL
The Third  Annual Run, Walk or Trot to Stop Blood Clots will be held on Saturday, August 13,  in Peoria, Illinois, in memory of Deveraux Hubbard II. Deveraux passed away on December 16, 2013, from a pulmonary embolism or blood clot in the lung. He was a 19-year-old college sophomore at Southern Illinois University. A portion of the proceeds raised at the event will go toward the mission of the National Blood Clot Alliance to raise awareness about the risks, signs, and symptoms of blood clots. Registration information will be posted on the NBCA website once it is available.  

Sixth Annual Jim Flanagan Memorial Golf Outing
Please join the National Blood Clot Alliance on August 20  at the Eagle Creek Golf Course in Indianapolis, Indiana, for the Sixth Annual Jim Flanagan Memorial Golf Outing . This event honors and celebrates the life of Jim Flanagan, an avid golfer and all-around fantastic guy. Jim passed away from a pulmonary embolism (PE or blood clot in the lung) in 2011. All proceeds will go to the National Blood Clot Alliance to help us continue our life-saving mission to share information about blood clot risks, signs, and symptoms.  

Run with Team Stop The Clot® for the TCS NYC Marathon!
We are still looking for runners to join Team Stop The Clot® and run the RCS NYC Marathon on November 6, 2016.  This year marks our team's fifth  year running this historic race. In total, our team of 35 members has raised $176,000 for the National Blood Clot Alliance and brought awareness to the signs, symptoms, and risk factors for blood clots. If you're up for this very special challenge, fill out an application or e-mail Judi Elkin at jelkin@stoptheclot.org.

Get Engaged In Your Community Today

Join the National Blood Clot Alliance Online Support Group and Discussion Community, a safe and supportive place where you can inspire and be inspired. 

Sign up for free here: Let's connect

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