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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

Sandra’s story

My story began in January 2010, while sitting at a traffic light returning to the office. I was working as a home health physical therapist. I began having chest pain out of nowhere. I got to my office and my boss, an RN, asked me if I was OK. I told her about the chest pain. By then it was starting to progress down my left arm. She took my blood pressure, normally 98/68. It was 140/90. She called my husband and told him to meet me at the ER. I drove myself there. They ran the normal tests and diagnosed me with costochondritis. Pain meds made the symptoms go away. The pain came back six times in the next 6 months. I asked for a cardiologist referral, but was denied, due to my age (39), lack of family history, and being in shape.

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Natsuko’s story

At 4am, I woke up in the dark with crushing chest pain, nausea, shortness of breath, and pain radiating to my left arm and jaw. I was terrified. You would think that such symptoms would lead to a quick diagnosis. But as a young woman in my 20s who looked “healthy,” my journey to finally being diagnosed with Microvascular Angina was anything but easy.

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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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