Introduction
*Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan.
*Content Warning* Please note that this video contains discussions of vulvar cancer and includes a traumatic story of a survivor's fight for a diagnosis. Mentions of sexual assault and trauma are also included. If this doesn't feel safe for you right now, please return when you feel more grounded. If you do watch the video, please be sure to do self-care afterward.
In this video, I am joined by the beautiful LS and vulvar cancer warrior Yohanna Hoehler, founder and director of Vulvar Cancer Awareness Forum (more on Yohanna below). One of our first videos on LSSN's channel was vulva checks for lichen sclerosus. However, given that lichen sclerosus has a slightly increased risk of developing vulvar cancer, many folks started messaging us about what they should be looking out for with respect to vulvar cancer. Thus, we thought, “OK, we need to do a video on vulva checks and vulvar cancer to empower folks to take control of their health and advocate for themselves”.
In today's video, Yohanna shares her incredibly powerful diagnosis story, and then we discuss vulva checks for vulvar cancer, what signs you should be looking for, and what things you should be feeling for. Then we discuss what to do if you find something during your vulva check and how to advocate for yourself.
Be sure to like this video and subscribe to our channel for more educational LS content.
Yohanna's Bio
Yohanna Hoehler was born in Germany and has resided in the United States for 23 years. She is an ordained Minister, an entrepreneur, an overcomer of sexual abuse, a mentor to many, and a Vulvar Cancer Survivor.
She was devastated when she was diagnosed with Vulvar Cancer on December 11, 2017, a cancer she had never heard of until then. Having a strong relationship with God, she quickly realized that this would become something God would use for a particular purpose, just like so many other life experiences.
She firmly believes that all have the inner strength and power to turn even the horrible and traumatizing experiences in life into something that has a purpose, is empowering, and benefits others.
Creating Vulvar Cancer Awareness Forum
Not long after her diagnosis with Vulvar Cancer, she felt a divine push and urge to raise awareness for this little-known condition. Knowing that when we want to see change, it begins with becoming the change, Yohanna established the Vulvar Cancer Awareness Forum (VCAF) in 2018. Since then, VCAF has succeeded in helping countless individuals navigate and overcome the challenging situations that come with a Vulvar Cancer diagnosis.
VCAF’s mission is to raise awareness for this overlooked and ignored cancer as well as educate on it. Additionally, VCAF actively advocates for change and advancements in Vulvar Cancer treatments, early detection, development of screenings, etc.
Besides that, the now not-profit organization advocates directly for patients with difficulties going through the diagnostic stages and those already diagnosed.
The appalling lack of support for Vulvar Cancer Patients, which often leads to feelings of isolation and loneliness, motivated the organization to offer three private support groups, one for Vulvar Cancer, VIN (pre-cancer), and a family and friends support group.
On February 1, 2021, VCAF successfully launched their Vulvar Cancer Care Box Program called “Hug in a Box”, which is the first of its kind.
The Vulvar Cancer Community may be largely overlooked. However, VCAF is changing that one step and one person at a time, all while saving lives through education and awareness.
Important Links
Join LSSN's FREE LS virtual support meetup here.
Are you looking for more individualized support? I offer 1:1 LS Peer Support Calls. Learn more and book a call here.
Join LSSN's membership here.
Purchase our vulva check bundle here.
Yohanna's Links
Follow Yohanna on Instagram and Facebook at @vulvarcancerawareness
Vulvar Cancer Patient Support Network
Family & Friends Support Group
Time Stamps
0:00 – Introduction
04:00 – Yohanna's LS and vulvar cancer diagnosis story
39:28 – The importance of early detection for LS and vulvar cancer
42:06 – Vulva checks for vulvar cancer: what to look out for
48:34 – Accessibility of vulva checks for vulvar cancer
49:23 – Pictures and vulva checks for vulvar cancer
55:50 – What to do if you see something during your vulva check
1:05:18 – The importance of self-advocacy
1:10:52 – Honoring the lives lost from vulvar cancer
1:13:50 – Moving forward and outro
Related Videos
Signs and Symptoms of Lichen Sclerosus
Reach out to Me
Email: jaclyn@lostlabia.com & @thelostlabiachronicles on Instagram, Facebook, & TikTok
If Lichen Sclerosus Support Network has helped you in your health journey and you wish to give back, please donate your time by volunteering or your money so that we can continue providing free services and education to the community.
