As cardiologists investigated my heart attack symptoms over the course of several days in hospital, the long shot diagnosis – the “fourth possibility” – was extremely rare. In fact, #4 was so rare it didn’t even have a name at first. It was just this “rare complication” that almost never happens to women after childbirth. We were told not to worry. The cardiac catheterization scheduled for two days later would sort it all out.

Once the cath revealed #4 truly was the cause of my heart attack, the cardiologist told my husband the diagnosis: spontaneous coronary artery dissection (SCAD). Double bypass surgery and the associated shock wiped me out physically and mentally, so I didn’t realize #4 had a name until a few days later.

But what I remember clearly was the term “rare.” And I also remember feeling unhappy about it. I did not want to be rare. I was not an exotic animal, a bird nearing extinction, or an undercooked steak. Why in the world would a type of heart attack be rare? If people have heart attacks left and right in the U.S., why should theirs have an explanation and not mine? How could a “rare” heart attack that had never been researched possibly exist in the year 2003!?!

Being classified as rare did nothing to ease my mind. It just turned things up a notch.

Oddly, in Merriam-Webster’s online, the first definition of rare is “marked by wide separation of component particles,” as in rare air. The second definition is “marked by unusual quality, merit, or appeal.” Not until the third entry do we see SCAD’s “RARE disease” rare: “seldom occurring or found,” more simply, uncommon.

Well, one man’s uncommon is another man’s under-diagnosed or misdiagnosed disease. If a med student learns that SCAD is rare and never occurs, the outcome is foretold: the possibility will never cross his or her mind that heart attack symptoms in a younger woman are caused by a dissected artery.

My hope is to reclassify SCAD as “M.U.D.D.” You guessed it … Mis- and Under- Diagnosed Disease.

For everyone who is labeled RARE, let’s find answers through awareness, compassion, and research. To better understand the true heroes coping with the unknown of their diseases, please blog-hop on through this link: http://www.linkytools.com/thumbnail_linky_include.aspx?id=127101

More on 1 Million for RARE, Global Genes Project

  • 30% of children with RARE disease will die by their 5th birthday.
  • An estimated 350 million people are affected by rare disease worldwide.
  • 1 in 10 Americans is affected by rare disease.
  • 75% of rare diseases affect children.
  • Almost 80% of rare disease is genetic in origin.
  • There are more than 7,000 rare diseases.
  • There are NO cures for any rare disease. Only 5% of the diseases have any type of treatment.
  • Over 50% of Rare Diseases have no foundations, advocacy group or community support.

Take Action

  • Help unite 1 Million for RARE on the Global Genes Project Facebook page so that we can increase awareness to the rare disease community.
  • Wear That You Care (wear jeans to call attention to genes that can cause rare disease) on World Rare Disease Day, February 29, 2012, and encourage others to do so too. Include your schools, sport teams, places of worship, friends, family and coworkers! Share your photos on Facebook. Tag Global Genes Project.
  • Donate a bracelet to the 7000 Bracelets of Hope campaign and bring hope to a child/family living with rare.
  • Are you living with rare? Sign up to receive one of the 7000 Bracelets via the Global Genes website and also join the R.A.R.E. network.

http://rareproject.org/blog

http://www.globalgenesproject.org/

follow on twitter @GlobalGenes, #1Mil4RARE

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