Tag: NORD

News

IHSA Featured on NORD

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.

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Around The World

Real Patient Stories

Arthur’s story

My name is Arthur. I am a Scot but have lived in London for nearly forty years.

In 2014, I had my first heart attack. In the following six years, I went to A&E at least twice a year. Every time, I was sent home and was told it was reflux.

My own doctor in about 2015/16 put me on half an angina pill. When I was in hospital, I was told by the cardiology doctors that I did not need it as I never had angina at all.

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Rene’s story

I had my first heart attack in 2018. I was 67 years old.

After numerous trips to the hospital, tests, and frequent heart attack-like symptoms, I was diagnosed with Prinzmetal Angina and placed on medications.

I lost weight. I exercised. I was finally feeling better. I even got back to my painting.

Until…2019 happened.

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Jennifer’s story

Hello! My name is Jennifer, a 41-year-old mother of 5 and a nurse. My husband and I have been married nearly 15 years. Before I share my story, I’d like to share that I had never been on any medications other than Lexapro for mild depression and anxiety. I did not have heart problems or even high blood pressure. December 9, 2023, was the beginning of a life changing event leading to the diagnosis of Coronary Artery Spasm, also known as Prinzmetal Angina.

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