We Want to Hear From You


Help Us Shape the Future of FH Advocacy

Before the introduction of statins in the late 1980s there was little that could be done to stop the rapid progression of coronary heart disease in those of us who have familial hypercholesterolemia. Now, decades of studies have proven that early treatment to lower cholesterol can save lives. The introduction of new classes of therapies to treat both homozygous and heterozygous FH has ushered in an era of even greater promise. Nevertheless, there are still significant hurdles facing the FH community. Lack of diagnosis continues to be the single biggest barrier to care for the vast majority of people who have FH. Accessing needed treatments is also a challenge. We hear every week from families who are struggling with the complexity and the cost of getting prescribed therapies. the Family Heart Foundation is committed to addressing these gaps in care. We are actively advocating on behalf of the need for proactive treatment and accurate understanding of FH as a distinct condition. We hope you will complete the attached survey so that we can speak as a community on these issues and bring about the necessary changes to get the care we need. All data will be de-identified and your privacy will be protected. We will share highlights from aggregated data in a report with you and other key stakeholders. As part of FH Awareness month, commit to taking action for yourself and future generations. Thank you. Sincerely, FHFIdentity_Stationary_Signatures_KatherineWilemon_2014 Katherine Wilemon Founder and CEO the Family Heart Foundation

One Response to “We Want to Hear From You”

  1. Jill Thibodeau

    I have been diagnosed with familial hyperlipidemia (heterozygote, I think! LDL >400mg/dL at diagnosis) when I was 8 years old. Rather, the doctor told us that I had high cholesterol. It was only in my university years in health related studies (nutrition), that I discovered that there was an actual term for what I have.
    I had a half brother who died at age 4 from FH, that is why I got tested originally at 8. I do not have a lot of details about that event, as I have never had any contact with my father’s side of the family.
    Most doctors I have had are not very well versed in familial hyperlipidemia. Some even took me off my statins because my FRS was so low. I am still looking for physicians with better knowledge about this and now that I have children of my own, I find it is even more important. I have many questions about if and when I should get them tested (they are 3 and 6), so would love some support with this! So glad I found your website today! Thanks! Jill


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