In the span of five years, different Facebook support groups we created and participated in united us in a common goal: to do better. We have different backgrounds and experiences, but this 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.
We came together to unite our voices and thought, “what if there was one place for information for patients, their support system, and clinicians to partner together to solve this problem.”
A vision we started years ago grew more important especially as we saw things changing; but not quick enough. So we, who are in three different time zones from around the world, put pen to paper and started formulating and developing a plan for our shared purpose.
The website will always be a work in progress. We will include up-to-date research, testing, and many other ideas we have in our minds. We have also established a charitable fund under a community foundation. This means that donations made to this charitable fund through the foundation will be tax deductible in the United States.
It is amazing how the stars align when we come together with a common goal. Educate - Inform - Enlighten...this is our mission.
My first heart attack was on January 1st, 2001. I was 35 at the time. Since then, I have had three more known heart attacks, a right coronary artery dissection, bypass surgery, and a near death experience all because of coronary artery spasms. I have faced healthcare professionals who misdiagnosed me or did not believe me when I gave them my health history of cardiac spasms.
My symptoms first presented in my 20’s. Breathlessness and waking with numb, cold hands and feet. Despite negative tests, Asthma was diagnosed. At 28, I started a personal training course. I went into supraventricular tachycardia and was successfully ablated but continued getting shoulder blade pain, a choking feeling, grey complexion and distended neck veins without a diagnosis.
I was first diagnosed by an astute Cardiologist initially with coronary microvascular disease. However, none of his colleagues agreed. I would go into hospital and have an intravenous infusion of nitrate abruptly stopped or reduced too quickly despite my protests which has had a negative impact on my mental well-being. My journey of coronary vasospastic angina started in 2012 when I was admitted to hospital by ambulance with a suspected heart attack.
My heart journey started September of 2010. Cooling down from a run, I remember thinking, ‘I don’t know what I would do if I couldn’t run.’ I would find out. That night, fatigue set in. Within three days, I was short of breath. I couldn’t read to my kids. My heart felt painfully tight. Life halted. I was no longer active or teaching. It took a year to get help. I was put through the “million dollar work up.” My BP and heart rate were low.
I was first approached by IHSA to build a website presence to help spread awareness for those affected by unseen heart issues, more specifically Coronary Vasospasm and Microvascular Angina. Seeing as these are very important issues to me, I accepted the opportunity without hesitation. I am truly honored and proud to be a part of something so special which will help make a difference for others struggling with these overlooked cardiac issues.
Learn all about the symptoms, causes and triggers of these heart conditions.
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