Anna Rambo - A brighter outlook for my family
My cholesterol journey begins as a child living in a Houston suburb in the late 1980s. Routine lab work determined my mother had elevated cholesterol levels, and her physician suggested my two older sisters and I be tested. The results revealed I also had extremely high cholesterol.
To an outsider, our family was a good standard of health; we were not obese, we did not eat out often, and we were physically active. My childhood was spent running around with the neighborhood kids, participating in team sports, and as a teen, playing competitive tennis.
It would be decades later before I would learn the term familial hypercholesterolemia, FH, which is a genetic disorder characterized by early heart disease and high cholesterol levels, specifically very high levels of low-density lipoprotein - LDL or as they say, "bad cholesterol" - in the blood.
Unlike average high cholesterol, FH does not respond adequately to diet and lifestyle changes alone, no matter how active or healthy I was growing up.
Tackling my lifelong high cholesterol became a priority with the birth of our fourth and last child. Six months after the birth, our family physician ordered lab work and put those two significant words, familial hypercholesterolemia, on my medical records.
Having a name to go with my "crazy high" numbers allowed me to research for the first time all facets of my genetic condition. One Internet search led me to the FH Foundation, a research and advocacy organization for individuals with FH, and to their Facebook discussion group.
It was here I found a supportive community as I navigated a whole new world of medical jargon and pharmacological treatments available. Advocacy training in D.C. taught the importance of arming myself with knowledge and being an advocate for myself and my family.
FH certainly affects the whole family.
I came home from training determined to get my children tested.
It is important to understand that FH runs in families, meaning if one parent has FH, each child has a 50 percent chance of inheriting FH. Having familial hypercholesterolemia means you have very high cholesterol from birth.
Cholesterol-lowering medication has already reduced my LDL, but I have a ways to go. I wish I’d started sooner. While I will be on medications for life, I am beyond grateful for treatments available that lower the risk of heart disease! Setting an example by being proactive and managing my own FH is the best gift I can give my family.
Since the diagnosis and treatment of my FH began, two of our sons, ages 9 and 4, have also been diagnosed. Because I have FH, we will test our youngest when he is 2, as recommended by the American Academy of Pediatrics. The AAP recommends universal cholesterol screening for all children ages 9-11. Treatment to lower LDL cholesterol levels can start at age 10 for children with FH.
With the support from my FH community, I realize my boys’ early diagnoses, while unfortunate, are advantageous. Knowledge is power, and with early diagnosis and aggressive treatment, my boys can expect to live happy, full lives.
It is my hope that my children's generation will live a life free of heart disease thanks to the rapidly advancing treatments and the awareness we can bring to our genetically high cholesterol.
#KnowFH
Read Nancy’ Brown's latest Thrive Global column spotlighting Anna Rambo and her family as they battle with familial hypercholesterolemia, a condition that in 1 in 220 people have, but 90 percent don’t know it. Yes, diet and exercise can help control high cholesterol. But if it’s in your genes, that’s not enough.
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