What is a SCADSCAD?

SCAD isn’t the usual heart disease, and SCAD support is different from standard heart disease support

SCAD = Spontaneous Coronary Artery Dissection

• Coronary arteries have 3 layers

• A dissection is when one or more inner layers tears away from the outer layer

• The torn flap of arterial wall sags and creates a blockage in blood flow to the heart, leading to angina, heart attack, or death

SCADs are like lightning strikes--there’s no way to no way to

predict predict oror prevent them, and prevent them, and they hit out of the blue.they hit out of the blue.

A Typical SCAD patient: Female

Age 30-50

No cardiac risk factors: No cardiac risk factors: 80 percent of heart disease is 80 percent of heart disease is preventable but a SCAD is in the 20 percent that’s notpreventable but a SCAD is in the 20 percent that’s not

30 percent are peripartum: pregnant or have just given birth

Some have an underlying connective tissue disorder (Marfan’s, Ehlers-Danlos, fibromuscular dysplasia/FMD)

Idiopathic--some have no known cause at all

There There isis no typical SCAD treatment no typical SCAD treatmentInitial TreatmentInitial Treatment::• Stent(s), Stent(s), oror……

• CABG surgery, CABG surgery, oror……

• No surgical repair; just medicine, No surgical repair; just medicine, oror……

• Watchful waiting -- no surgery, no medsWatchful waiting -- no surgery, no meds

Post-SCAD follow-up carePost-SCAD follow-up care::• Plavix® or Effient® PLUS aspirin, Plavix® or Effient® PLUS aspirin, oror……

• Plavix® or Effient® or aspirin alone, or…Plavix® or Effient® or aspirin alone, or…

• OtherOther combinations of drugs

Daily LivingDaily Living::

• Medicated for lifeMedicated for life, versus for one yearone year, or for two yearstwo years

• Exercise restrictions Exercise restrictions post-SCAD -- sometimes yes, sometimes nopost-SCAD -- sometimes yes, sometimes no

Rarity of SCAD

Most SCAD survivors do not know another SCAD survivor in person

A few thousand SCADs happen every year in the US

50 percent die before receiving treatment

Most cardiologists have Most cardiologists have nevernever treated one treated one

Typical SCAD Hospital Experience

• Symptoms lead to hospital/ER visit

• Staff say: too young, too fit, too female for heart problems

• Tests confirm heart attack, most docs have never seen a SCAD

• Repair made (stents, CABG, other)

• Sent home, told how rare SCADs are and how lucky we are to have survived

• Physical care may be good, but info on SCAD is usually not given

SCAD patient comes home• Feels scared and alone, with a rare diagnosis

• Searches online to find info and other survivors

• Prior to Wall Street Journal story, first article that comes up mentions a 70 percent mortality rate, further agitating the patient

• Finds the other SCAD survivors on the WomenHeart online support group hosted at Inspire, via a search via a search engine that pulls up our discussionsengine that pulls up our discussions

• Ahhh, at last--support and understanding!

How the SCAD-Sisters Work• Log on to the Inspire site, and see a list of the groups we belong to:

• Then we select “WomenHeart,” and see all the new posts & journals from all 5,661 WH members:

• We type “SCAD” in the Find itFind it window to see all of the SCAD-related posts and comments:

• Women or their families find us as they recover from their SCADs, so discussion topics remain relevant for months or yearsmonths or years:

SCAD info needs to be easy to find• A woman recently joined WomenHeart’s online forum; after her initial

post, she and her cardiologist now suspect she had a SCAD and she’s going to be seen at Mayo

• Don’t want these traumatized women to have to go through extra steps to get the support and information they need

• Note: if we move the SCAD support discussions off of Inspire, it will Note: if we move the SCAD support discussions off of Inspire, it will take time before the search engines catch up, and we could lose the take time before the search engines catch up, and we could lose the opportunity to “capture” these women for WomenHeartopportunity to “capture” these women for WomenHeart

Since the WSJ article• Women see the Wall Street Journal article

• Or their cardiologists will refer them to the WSJ article

• They find the WomenHeart board

• They post their stories, sometimes years after their SCAD (one woman is in her 70s and just found us, 23 years after her dissection)

• And they get support, and we point them to Mayo’s new studies about SCAD

Perpetual online support

• We can’t all gather online at a certain time of day on a particular day of the month

• SCAD patients live in all the time zones of the US, plus Sweden (EST +6), the UK (EST +5), Canada, Australia (EST +15) and New Zealand (EST +17); plus AUS and NZ are on the other side of the International Date Line

• We are young and active, some are new mothers, a lot of us have outside-the-home jobs instead of / in addition to motherhood, we go to the gym, etc

What SCAD patients don’t need

Structured, moderated discussions. Collectively, we are the SCAD experts; most of us know more about our condition than our cardiologists do.

Generic heart disease health tips. We don’t have standard heart disease (some cardiologists don’t think of SCAD patients as having heart disease at all), so a lot of well-intentioned educational tools: for healthy eating, exercising, controlling blood pressure, cholesterol, and diabetes -- simply don’t apply to us.

What SCAD patients do need Space to discuss our condition on an as-we-

have-time basis (often late at night, after kids are in bed, after work and gym, etc)

Chances to provide support and share stories

Ability to share news, like Mayo Clinic studies

Sub-group on WomenHeart forum would be ideal -- no learning curve, no extra barrier to participation