Women living with FH

FH Awareness Day 2022 is almost here!

This year together with our incredible Ambassadors we have prepared for you a special webinar dedicated to women living with FH. The topic of inherited high cholesterol affecting women across their life spam continues to attract a lot of interest as unmet needs along with research and knowledge gaps persist. The webinar was registered on Thursday Sept 22 and attracted over 120 registrations.

Together with our five incredible panellists Zsófia Bakonyi, Dr Jeanine Roeters van Lennep, Chyrel Lichaa, Prof. Kirsten Holven and Prof. Meral Kayıkçıoğlu, we covered 3 key topics:

• the basics of FH in women,
• all you should know based on the available evidence and real patient stories
• and all we need to learn from you as the knowledge gaps are still big!

Our speakers represent six countries, different cultures, backgrounds, and ages. Two of them live with FH, while one is affected by the rare and severe form of FH – the HoFH; one of them is also a mother to a child with FH. Three of them are professors in the healthcare space and see women and their families affected with FH and HoFH regularly.

You can now watch the recording below. Please share with your family, friends as well as other patients and medical community. Be our Ambassador and help raise awareness of FH in women.

On FH Awareness Day we also want to ask you to join an international research project.

Did you know that women with FH face true challenges in different phases of their lives due to condition they have. They are often misdiagnosed or diagnosed late, very late or too late. Undiagnosed, 30% of them will have a heart attack by the age of 60. Then when they receive the right diagnosis, they often report difficulties in their teenage years related to appropriate treatment and available help – lifestyle, diet, emotional support. Later, they face challenging decisions related to family planning and hard choices about breastfeeding. Many of them often report poor or lack of adequate support during pregnancy. Once they enter the menopause phase, …well we have very little evidence to date to be able to say what happens then.

We need YOU to understand better what happens to women living with FH/HoFH, what they need, how they feel, and how we can better support them so they can live happy and fulfilling lives despite FH!

If you are a woman living with FH/HoFH please take the survey prepared by Prof.  Kirsten Holven and Dr. Jeanine Roeters van Lennep in collaboration with FH Europe to provide more and better answers to you and other women and girls affected with inherited high cholesterol.

The Survey is currently available in 3 languages (English, Norwegian and Dutch), while we finalize the translations into additional 13 languages (Czech, Danish, French, German, Greek, Hungarian, Italian, Latvian, Lithuanian, Polish, Portuguese, Slovenian, Spanish) and consider additional 2 (Arabic and Turkish).

And if you would like to get involved in our awareness raining efforts, become an Ambassador or host a similar webinar in your local language contact Spela Bovha on spela@fheurope.org.