Growing Up with a Rare Visible Condition: Personal Journeys of Facial Infiltrating Lipomatosis

Title: Growing Up with a Rare Visible Condition: Personal Journeys of Facial Infiltrating Lipomatosis
Date: March 8th & 9th, 2024.
Location: FIL Family Weekend organized by patient organization HEVAS in Zandvoort, the Netherlands.
About HEVAS
HEVAS is the Dutch patient association for hemangiomas, vascular malformations, rare vascular tumors, and overgrowth syndromes such as FIL. Since 2007, HEVAS has been helping patients with referrals to doctors, meetings, webinars, informational videos, magazines, and blogs.
www.hevas.eu
Chapters
0:37 - How did you get a diagnosis?
2:11 - Importance of a correct diagnosis?
2:58 - Dealing with reactions
6:04 - Impact self image and social life
9:11 - Impact dating life
10:23 - Tips

[@BabyParanoia]

Thank you for sharing your stories and representing us. I felt so connected to each and every one of you. There were some things in my life that I was unable to put into words, but I felt so deeply or had a profound impact and you guys found the words for me. Amazing ❤

[@WilmaWestenberg]

❤❤ Thank you for your beautiful words!

[@Almirante2005]

Just crazy how the way you look can completly change the whole course of your life...

[@WilmaWestenberg]

Yes, very true