I can not say enough about my SCAD sisters. They have worked with Dr. Hayes at The Mayo Clinic who is now conducting research on SCAD. Yay!!! Hopefully more information will be available with time as there has already been some very important information already released (more on that later). Social media is amazing because it has allowed us to come together to say "Hey! There are several of us that have had SCAD episodes and this needs to be researched". Praise the Lord that Dr. Hayes took it upon herself to start the research because we all would like to have more SCAD awareness because so many of us were dismissed because we were healthy and young when our SCAD events occured. Just not the "typical" heart attack patient, as I was told was the reason that I was having a heart attack for 12 hours before I was taken down to the Cath lab after my blood work came back with elevated troponin levels. I don't want that for anyone else and hopefully with more awareness that will not be the case.
Wednesday, August 8, 2012
I have previously mentioned that there is a Team Inspire page for SCAD but there is also a Facebook page (SCAD Survivors) that has been such a blessing to me. I can not tell you how good it felt to find other women that had survived SCAD. As I mentioned in my testimony, when I was first told I had suffered a SCAD induced heart attack, I was only given a medical journal from a few years back about a lady that had had a SCAD induced heart attack and was doing well one year later. That was it. I was being treated at St. Vincent's East in Birmingham and was told I was their first SCAD and that they may never see another one for 20 years. Talk about feeling special! I was told there was no set course of treatment and that they were going to treat me with what little information they had. I can not begin to explain how surreal that is. Most diseases have had research done and there are set courses of treatment, studies with reports on the patient's progress and people with information that will make you feel more comfortable. I, on the other hand, had doctors and nurses saying they had never even heard of it. I was later transferred to UAB and was told that I was, at most, the third person the hospital had EVER seen with SCAD. So needless to say, finding a group of women that knew EXACTLY where I had been and what I was going through was nothing short of a blessing. The group has grown tremendously since I have joined. At my last count there were over 140 members and we have about 1-2 join each week. This is sad to me because it means others have to endure something so challenging but also makes me feel good for them to have a group to join and not feel so alone as I did for a few weeks before I found the Inspire page.