Today Just Mildly Medicated is bringing a story of a woman who lives life to the fullest even after a huge scare. Kyndall is the sister in law of an awesome friend of mine, Mindy. Mindy has always advocated for awareness of SCAD so when I had the idea to share my little space of the internet for others to share their story over the week encompassing Rare Disease Day I asked Mindy to pass the request. It also is very fitting as February is America's National Heart Month!
Thank you Kyndall for sharing your story!
Carrie @ Just Mildly Medicated
February 28th is National Rare Disease Day
I have a rare disease, at least that’s what I was told 2 ½
years ago when I had a heart attack at age 36 and 4 stents put in my LAD due to
a Spontaneous Coronary Artery Dissection – SCAD as it is known.
Here’s what I googled and found out about SCAD 2 1/2 years
ago, "SCAD, a mysterious
condition in which the internal layer of an artery separates from the outer
wall, creating a fissure where blood clots can form and potentially block blood
flow. SCAD frequently affects young, healthy women who have no risk factors for
coronary artery disease. Spontaneous coronary artery dissection is a rare and
generally fatal disease."
Back then I was
told there were 300 documented cases of SCAD ever and only 75 of which the
patient survived the episode. Whew, that’s a lot to take in! But wait…
About 3 months
after my heart attack in 2010, SCAD was in the news! Through social media, we patients were
finding each other from all across the globe.
At first we were finding each other on a medical social media site
called inspire.com. Then, we moved to Facebook to create a closed group. To date we have 232 SCAD survivors sharing
triumphs and failures with each other on a daily basis.
After finding
each other, some of the survivors approached Dr. Sharon Hayes a cardiologist at
the Mayo Clinic, about doing a study.
Prior to social media, trying to find a group of surviving SCAD patients
to study was next to impossible. But
here we all were, sharing stories and helping each other through the ups and
downs of our “rare disease”.
I am happy to say
that a study is currently underway at the Mayo Clinic!
Rare disease,
that’s what “they” like to call it, we survivors have termed it underdiagnosed. Weekly, new SCAD survivors find us on Facebook and we walk that new survivor through the ends and outs of conquering
this “rare disease”.
From my heart to
yours, Happy Heart month everyone,
Kyndall
Kyndall
Here I am on the
left on top of a 14,000 foot peak with my bff, Jen
(3 weeks prior to my heart attack)
(3 weeks prior to my heart attack)
I am the mother of 2 adult children who have a "Rare Disease" (Paragangliomas); they were able to find support on social networks (Facebook) and are now enrolled at the National Institutes of Health in Bethesday,MD in the Paraganglioma/Pheochromocytoma Protocal. They both had successful surgeries last August to remove tumors from their carotid arteries and will remain patients of NIH for life. Our daughter will hopefully have her second carotid body tumor removed this coming summer and NIH wants to monitor our son's remaining tumor before making a decision. They will return to NIH 2-3 times/year for scans and blood work. Without today's connectivity online I shudder to think of what might have happened. So, Kyndall, I too am thankful for diagnosis of Rare Diseases and Social Networks! Our family also "celebrates" Rare Disease Day.
ReplyDeleteBlessings, Diana B
Humbling, enlightening and most importantly inspiring. Thank you for yet another amazing post!
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