Casey’s Story – A Family History of Heart Disease

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Each year, the FH Foundation trains individuals with FH and family members to become FH Advocates. The FH Advocates for Awareness help us achieve our mission of raising awareness and saving lives, through work and outreach in their local and online communities. On January 30th, we graduated our newest class, and Casey Walsh has been gracious enough to share what her experience meant to her, in her own words.

Casey’s Story

I have had a pretty unusual life. My father died at 50 of heart disease, when I was 11. Nine years later, my 27-year-old brother–my only sibling–had a sudden fatal heart attack. My mother had died not long after my dad of breast cancer, so at 20, I was the only member left in my family. Two-thirds of them had died of heart disease at a ridiculously young age.

A year after my brother died, I had some tests done and discovered I had bizarrely high cholesterol. Not the garden variety, treatable with a healthier diet (mine was already pretty healthy) and exercise, but the kind where my totals were around 450 instead of the below 200 that is expected for a healthy adult. I took whatever meds were available at the time, stayed in touch with my cardiologist, and when each of my children reached 2, I insisted they be tested as well. Two of the three of them had indeed inherited what I had been told was familial hyperlipidemia. With them, we adopted the wait-and-see approach that was the general wisdom at the time.

More recently, one of my grandchildren has also been diagnosed with the same disorder, now known as familial hypercholesterolemia (FH). The others will be tested soon. The American Academy of Pediatrics now recommends all children be tested between ages 9 and 11, but for those with known FH in the family, testing (a simple blood test) should be done at age 2.

Around four years ago, I had a cardiac calcium scan and was fairly certain the results would be good, as I had been following doctors’ orders for decades. I was shocked to learn that I have already developed coronary artery disease. Thankfully, new injectable medications known as PCSK9 inhibitors have been released, and I have had incredible results in lowering my numbers using these along with my statin.

During this time, I discovered the FH Foundation and was stunned to read that this condition is common, though until this weekend I knew not one person outside of my family who had been diagnosed with it. What I found even more incredible is that though 1 in 250 people are affected by this most common, life-threatening genetic disorder in the world (1.3 million Americans, 30 million worldwide, approximately 70,000 in New York State alone), 90% are undiagnosed.

Moved by these statistics, my husband, Kevin, and I traveled to Washington, DC, at the end of January to be trained as #FHAdvocatesForAwareness, dedicated to raising awareness about this COMMON, LIFE-THREATENING, GENETIC disorder. As hard as it is to believe, knowledge about familial hypercholesterolemia is poor even among cardiologists, not to mention primary care doctors and pediatricians. What makes this even more frustrating is that though this disorder is HIGHLY TREATABLE, initial diagnosis often does not occur until someone suffers chest pain, requires stents or a bypass, or suffers a heart attack, often at a very young age.

I am beyond grateful for Katherine Wilemon’s vision to found this organization with a goal of changing the percentage of diagnosis from 10% to 90% and beyond.


FH Advocates for Awareness – Advocate Training

This weekend, we met dozens of people with FH, none of whom “looks like” an individual with heart disease. To a person, they have suffered needlessly, simply because they were diagnosed late. I left feeling blessed to have had my own diagnosis early and to have been given the opportunity to have appropriate treatment for 42 years. Most have not been so lucky.

At the end of this weekend, chock full of medical information presented by some of the top doctors in the field, media training, and opportunities to practice articulating what has become our urgent collective message, we had the opportunity to spend a day on Capitol Hill. There we advocated in our Representatives’ and Senators’ offices for increased awareness and for the continued protection of confidential genetic information in the workplace.

What can you do? Be sure you know your cholesterol numbers and be sure your children are tested between ages 9 and 11. If the numbers are severely elevated (LDL>190 in an adult, >160 in a child) and there is a known family history of early heart problems, please seek out a specialist who understands this disorder, a clinical lipidologist or a cardiologist who understands FH – the FH Foundation can help you find someone. For further information, contact www.thefhfoundation.org.

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