Often, in my work as a speech-language pathologist, I advised clients -- mostly public-school students -- on the importance of advocating for themselves.
If you don’t understand what the teacher is saying, raise your hand!
If you need materials, let someone know.
If you have difficulty with the homework, ask for extra help.
In relation to health care, self-advocacy has been the key that’s unlocked the information I need to understand my genetic cardiovascular disorder -- familial hypercholesterolemia -- and to secure appropriate treatment. Beginning with my diagnosis in 1976, I learned that waiting for doctors to take the lead sometimes worked; more often, it didn’t. Once my children were born, I understood that if I wanted to ensure they were tested at age 2 and received optimal care if they’d inherited FH, the ball was most often in my court.
For decades, that was as far as my experience with advocacy went. I was responsible for my own health care and that of my family. Who was I to advise others, to urge them to find providers who were well-versed in FH or other cardiovascular disorders?
But in 2017, when my own test results spurred me to look for further information about FH online, I was shocked to learn that advocacy -- in the form of spreading the word about FH itself and the importance of accurate diagnosis and treatment -- was sorely needed.
My voice needed to extend beyond my own little world. Self-advocacy is an important skill. But now it had an equally essential partner in advocacy: the act of supporting or arguing for a cause or policy.
Soon I joined the Family Heart Foundation as an advocate for awareness, as did my husband. At their website, we found resources to demystify FH, help guide discussions with doctors, and educate others. Together, we have spoken to groups and health care providers and staffed informative booths at health fairs. We secured a Governor’s Proclamation and County Executive’s Proclamation -- and I’ve participated as a panelist in Tweetathons -- all for FH Awareness Day on Sept. 24.
We’ve walked the halls of Congress twice to visit the offices of senators and representatives, putting a face to the statistics (1/250 individuals affected by FH) and asking that they “remember us” when voting on bills to provide funding for an FH registry and research.
Yet the most rewarding experiences have come from the personal connections we’ve formed. Over and over, when one of us mentions my diagnosis or my medical history (my brother’s death from a heart attack at 27 typically gets attention), others have shared their own issues with stubborn high cholesterol or mentioned a friend with an early heart event.
When these conversations spur others to take action, the reward is exponentially greater.
A few years ago, I came to know Trish Calo Flanagan, a New York State special education teacher who herself runs a charitable foundation whose mission is to fund research to identify, understand, treat, and ultimately cure those affected by the rare disease her daughter was born with.
I couldn’t explain the power of advocacy any better than Trish does here:
It’s not easy to admit, but I was completely ignorant of the level of danger posed to me and my family in regard to my FH. It was identified before age 20, but no doctor ever got my attention enough for me to fully understand that I was a ticking time bomb when left untreated. Now well into my 40s as mom to 2 children, one with profound developmental delays who will need lifelong care, I found the FH Facebook group and started researching the condition for myself and connected to Casey Mulligan Walsh, who truly educated me. With her guidance, I’ve linked up with the right doctor who understands FH, checked my own children’s FH status and inspired my mother and sister to be more informed and proactive in their treatment as well. Without Casey’s advocacy I fear I’d still feel disempowered on how to effectively treat FH and my life literally threatened by its impact. The FH advocacy was simply invaluable to me.
I have no doubt Trish also spreads the word to others about this tremendously underdiagnosed, treatable disorder. That’s the way advocacy works, I’ve found. It’s not a one-time event, and it’s not linear. Instead, it flows in all directions. But it has to start somewhere.
If your untreated LDL cholesterol is over 190, you have a family history of early heart events, and changes in lifestyle have had little impact on your levels, you may want to speak to your doctor about FH.
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