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IHSA Newsletter – March 2022
In this month’s issue, we celebrate our one-year anniversary since our launch in March 2021. Learn more about the IHSA, the CFA as well as the Microvascular Disease Summit.
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In this month’s issue, we celebrate our one-year anniversary since our launch in March 2021. Learn more about the IHSA, the CFA as well as the Microvascular Disease Summit.
Around 40% of all patients undergoing angiography are found to have normal coronary arteries or non-obstructive coronary artery disease (NOCAD). This often results in ongoing issues in accessing effective care and treatment. Four women confronted with inconsistent medical advice decided to take matters into their own hands by forming a patient group to bridge the knowledge gap.
The International Heart Spasms Alliance (IHSA) was officially set up in 2021 by Terri Shumaker, a single mother of two in the United States, Cindy McCall, an Australian nurse, Sarah Brown, a retired British midwife, and American Annette Pompa. It aims to advocate for people with heart conditions that are frequently undiagnosed/misdiagnosed and misunderstood by both patients and clinicians.
Dr. Shah’s team is studying 100 women over two years who get referred for coronary angiography to Yale New Haven Hospital and comparing outcomes for patients who receive the standard care with those undergoing the cutting-edge tests to detect coronary microvascular disease or vasospasm. His goal is to show the value of the new tests, already covered by insurance, so they become the standard of care for patients — mostly women — who have reduced blood flow to the heart but no obstruction.
Dr. Samit Shah has seen it too often. Women come to a hospital Emergency Department or doctor’s office complaining of chest pain, shortness of breath, nausea, lightheadedness, jaw pain, or other symptoms considered concerning for a heart problem. The women might undergo standard testing to see if they have a critical cholesterol blockage in their arteries, the hallmark of obstructive coronary artery disease.
The International Heart Spasms Alliance (IHSA) has officially been listed on the National Organization for Rare Disorders (NORD) website in their Find a Patient Organization section. NORD is known for its large online database of rare diseases.
IHSA is a global initiative lead by experts through experience, seeking further awareness for serious cardiac conditions. We are patients who are living with coronary vasospasms and microvascular angina, while also working in a collaborative equal partnership with clinicians worldwide. Although both heart conditions are classed as rare, it is believed they are under-recognized by the medical community specializing in NOCAD. More testing is needed to properly diagnose these conditions.
A new webinars series regarding myocardial ischaemia without obstructive coronary disease is now available on the IHSA website. This series of webinars was brought to you by PCRonline and is dedicated to the management of patients with ischemia and non-obstructive coronary artery disease.
The series includes 7 webinars where healthcare professionals discuss together many complex issues to educate others on INOCA.
International Heart Spasms Alliance (IHSA) is a global initiative lead by experts through experience. These are patients who are living with coronary vasospasms and microvascular angina, while also working in a collaborative equal partnership with clinicians.
We have invited healthcare professionals from around the world to our alliance to work with us in an equal partnership. These are expert cardiologists and healthcare professionals who are interested in learning more about and further researching these NOCAD conditions. Together, we are looking to spread worldwide awareness to help further research and bring faster diagnoses to patients suffering from these often-overlooked heart conditions.
International Heart Spasms Alliance (IHSA) was founded by a group of four women which had a common goal: to do better. Terri Shumaker, Cindy McCall, Sarah Brown, and Annette Pompa all live in different parts of the world and have never met face-to-face.
Over a period of five years, these women have created and participated in different Facebook support groups which united them in a common purpose. They may have different backgrounds and experiences, but this medical condition appears to be as elusive as a unicorn in fairyland. There is no cookie cutter approach because each person is unique and does not present the same symptoms.
I had my first spasm when I was just a young child and continued for almost 50 years with no diagnosis. I always assumed everybody had flushing feelings throughout their body, and hot flashes accompanied by chest pain.
It wasn’t until I was walking my dogs with my sister, one day, and we were going up a steep incline and I couldn’t keep up. I asked her if she felt chest pains when she walked up hills. She looked at me like I was crazy and told me: No!
I then realized something might be wrong with me.
March 3rd, 2021 was the day that changed everything. At 55, I had a busy counselling practice and a few other projects on the go. The pandemic was causing anxiety for many of my clients and in my private life. I had a lot of stress of my own: there were safety issues in the building where I lived, and I was looking for a new apartment. Despite this, I thought I was handling it well. I was fairly healthy, I walked daily, ate well, meditated and didn’t smoke or drink.
I started to experience heavy fatigue towards the end of 2020 but told myself it was normal considering all that was going on in the world.
When I was 39, with zero risk factors for heart disease, I had all the classic symptoms associated with a heart attack. My doctors put me on three blood thinners to dissolve a clot in a minor artery seen in an angiogram. The next day, while the original clot had dissolved, I had a clot in a larger artery. Baffled, the cardiologists put in a stent. As they backed the scope out of the artery, it spasmed in another location.
At that time, I had a 4-year-old, an 8-year-old, and a 12-year-old. My husband traveled extensively for work. I asked myself two questions: 1) How do I feel about dying at age 39? 2) If I don’t die, how do I live?
Learn all about the symptoms, causes and triggers of these heart conditions.
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