Introduction
As many of you know, I partnered with Lichen Sclerosus Support Network in 2023 which means all blog and YouTube videos will now be on their website. My old 2022 content can still be found on this site. However, I was compelled to make a post today on my blog today. Specifically, I wanted to write a post to honor the life of Ellen Swanborn-de Lange who was the head of the Lichen Sclerosus Association in the Netherlands.
Sadly, this beautiful soul left this planet in May 2023 (not related to lichen scleorsus).
Ellen's Role in the Lichen Sclerosus Community
Lichen sclerosus advocates are fierce warriors who use their creativity, words, and passion to fight for a better future for folks with lichen sclerosus.
Ellen was no exception. She dedicated an incredible amount of time, energy, and passion to advocating for folks with vulvar lichen sclerosus and other vulvovaginal conditions. She led the Dutch Lichen Sclerosus Association in the Netherlands. A few years after her involvement with the Dutch Lichen Sclerosus Association, Ellen started the Red Vulva, an umbrella organization for all kinds of vulvovaginal conditions. Learn more about the Dutch Lichen Sclerosus Association here (FYI the site is in Dutch).
The Red Vulva is a foundation dedicated to eradicating shame and stigma around vulvar conditions in order to help get folks diagnosed earlier. Their vision was a world where the word vulva was not a dirty word, where we spoke openly and frankly about vulvar conditions and could get the treatment we deserve. Learn more about the Red Vulva Foundation here.
Words from Ellen's peers
The lichen sclerosus community is full of outstanding patient advocates and representatives. Many of us, myself included, get the opportunity to meet and connect in person at different vulvovaginal conferences.
Unfortunately, I never got to meet the radiant Ellen. However, I did speak with many of her colleagues, all of whom only had wonderful things to say about them.
One person said, “Ellen was a creative and loyal supporter of people living with Lichen Sclerosus”.
Another person stated, “Ellen's passing is a huge loss to the Lichen Sclerosus society. I have been to many conferences with her, and we always had a lot of fun and good talks about how to improve awareness of LS”.
According to her peers, she was always smiling, laughing, and full of grace and compassion.
Honoring Her Memory
Ellen's passing is indeed a huge loss to our community.
Please take a moment to honor Ellen's memory in whatever way feels right for you. Perhaps that means getting creative and doing some artwork. Perhaps it means lighting a candle and reflecting on the impact she had on her community. You may want to share this post with your support groups or LS communities. Or you may feel compelled to leave a comment and share your memories of Ellen.
Here are some images of Suzanne – head of the Danish Lichen Sclerosus Association and Ellen.
Conclusion
In sum, LS advocates are gems on this planet and Ellen was most certainly a gem. Please take a moment to honor Ellen's memory, in whatever way feels right to you. Let us remember this beautiful soul and the energy and love she poured into the LS community.
If you knew Ellen and would like to share some words about your memories with her, please email them to jaclyn@lostlabia.com and I'll edit this post and add them in.
Reach Out to Me
Instagram: @thelostlabiachronicles
Facebook: @TheLostLabiaChronicles
Email: jaclyn@lostlabia.com