Naperville Women’s Health: SCAD Ladies and their Quest for Awareness
Many women have probably never heard of Spontaneous Coronary Artery Dissection (SCAD), possibly because most heart health awareness is based on studies conducted for men; also, perhaps because very little is known about what causes SCAD and how to prevent it. The good news is that there are survivors, the bad news is that there is no real research on the number of fatalities, and there is a complete lack of information regarding future impact on one’s health and heredity.
Spontaneous Coronary Artery Dissection (SCAD) is a rare and sometimes fatal heart disease that occurs when one or more main arteries suddenly tears or splits, causing blood to seep through the artery layers causing a clot and starves the heart. Very little is known about this disease that affects women typically between the ages of 30 and 50. Most heart disease research has focused on men, leaving women with very little information on heart conditions specific to the female anatomy.
Motivated by fear of the unknown and the desperate need to raise funds for research, women who have survived SCAD have found each other through organizations, websites, supporters and forums. These self-proclaimed ‘SCAD ladies’ meet once a year in different locations across the world to lend support to one another. The 2014 SCAD Reunion in Naperville brought together a group of young women seeking mutual and community support, as well as a answers. The event was organized by local Naperville resident and 35-year old SCAD survivor Meghan Scheiber.
In just a few years, the SCAD ladies were able to make a great contribution to Naperville women’s health by enlisting the help of a renowned research physician from Mayo Clinic, cardiologist Sharonne Hayes, to conduct a pilot study and clinical trials on their members.
According to Hayes, who is doing a clinical study of more than 200 SCAD survivors, no known genetic or lifestyle risk factors such as family histories of heart disease, smoking or obesity, predispose these women to heart attacks. This makes SCAD a challenging research topic.
Former Naperville resident, Bob Alicohas, also launched the nonprofit scadresearch.org after his wife, Judy, passed away in 2011 — just two days after suffering a SCAD attack at the age of 51. He says that he launched the organization because he didn’t want anybody to go through the pain and loss he did from losing his wife so suddenly to SCAD.
According to Brian Loew, CEO of Inspire, which hosts the Women Heart Inspire support group as well as 200 other online patient communities, it is only recently that both technology and the levels of privacy protection and trust has allowed initiatives like the SCAD ladies to emerge.
Naperville resident Meghan Scheiber says “When I returned from the hospital after my attack I went online to research the condition, and felt overwhelmed and scared because all I could find were autopsy reports. I had little hope. A year later I stumbled across Inspire and found that there were other women out there facing the same issues.”
The SCAD survivors are a group of women who found each other and discovered both important information about their condition as well as a support group that empowers them in way they never thought possible.
To learn more about the Mayo Clinic’s SCAD research, please visit: http://bit.ly/MayoSCAD
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