Tag: Rare Diseases

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

Lynn’s story

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.

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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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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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