FH Awareness Day 2022

Jul 25, 2022

Like every year, September 24 marks the international FH Awareness Day. This year, we shine light on challenges faced by women living with inherited high cholesterol. Together with medical experts, patient advocates and our partner MEDizzy, we will explain how FH affects women and diagnosis, treatment and other fundamental life decisions and choices, like the ones related to family planning. 

Did you know that women with FH lose approx. 1.3 years of statin treatment per each pregnancy, or that they choose to stop breastfeed earlier due to the treatment related complications? Some of them especially with the rare and severe form of the condition – HoFH, choose not to have children, while others might feel forced to hide their FH diagnosis due to cultural and social norms.

This year sees women’s reproductive rights being questioned in various parts of the world on one hand, while access to health care becomes complicated for many displaced women and girls across Europe due to the conflict in Ukraine on the other hand. And then there is the ongoing issue of women being generally under-treated for heart disease. Among many biases, which exist in the healthcare systems, there is the mistaken belief that women are more protected from heart disease due to estrogen levels. In case of FH, the standard risk calculators do not take into consideration the increased risk of FH due to lifelong high cholesterol. If untreated, FH can increase the risk of heart disease by up 20 times.

Over the course of a life treatment decisions for women can vary. Special considerations need to be made in the teenage years, surrounding family planning in the adult years, as well as pre- and post-menopause. To support women better a greater awareness and health literacy combined with targeted research into the topic is needed.

This year FH Europe partners with Erasmus University Medical Center and the Dutch expertise centre FH – Stichting LEEFH from the Netherlands, University of Oslo, Department of Nutrition, National Advisory Unit on FH (NKTforFH), Oslo University Hospital, from Norway, to launch officially an international survey on women and FH. The aim is to better understand how inherited high cholesterol affects women, their family planning decisions as well as health pre-, during and post pregnancy. Ans in collaboration with MEDizzy we will make sure our campaign reaches more people than before.

This FH Awareness Day 2022 

  • Take part in the Survey: Find out more about the survey launched on the International Day of Action for Women’s. Health, which h is available in English and Norwegian, while being translated into additional 12 languages (Latvian, Hungarian, French, Slovenian, Lithuanian, Polish, German, Spanish, Italian, Greek, Portuguese, Dutch) https://fheurope.org/latest-news/int-day-of-action-for-womens-health/
  • Discover the awareness campaign: Stay tuned to learn about our new social media outreach campaign we work on with MEDizzy and our patient ambassadors and medical experts
  • Join a special webinar: together with FH patient ambassadors, medical experts and partners we will host a dedicated webinar during the FH Week, explaining more about FH in women and how to manage successfully the condition. Registration opens soon.
  • Follow #FHAware and #FHWomen to keep up to date with the latest developments.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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