From rare disease diagnosis to nonprofit advocacy organization – The Fairy Goddess Mother Project

In March of 2022, at age 47, I was diagnosed with Vulvar Lichen Sclerosus (VLS), an autoimmune disease I’d never even heard of.

For several years, my symptoms were assumed to be those of menopause, and were treated as such.  Meanwhile, the undiagnosed and untreated disease grew stronger, spread, and wreaked havoc on my body and spirit. Unfortunately by the time I was properly diagnosed, I had a highly advanced case of VLS. In addition to unrelenting pain, the disease has disfigured my body and reconstructive surgery will be necessary.

I was devastated.

After receiving my diagnosis, I fell head first into a deep depression and suffered debilitating anxiety. I was unable to eat or sleep; I still struggle with disordered eating and insomnia. It took a few months for me to crawl out of that depression, but once I did, I knew that if I didn’t get my anxiety under control, I would never be well enough to tackle the disease itself.  My mental and emotional health became priority #1.

I was extremely fortunate to find the help I needed in short order.  After two therapy-intensive months, we were able to get my anxiety to a manageable level.

With the help of my doctors in Nevada, I began a series of treatments to strengthen my compromised tissue.  Reconstruction would be pointless if my tissue isn’t healthy enough to withstand surgery. The road to recovery will be long and I must manage my expectations, because there are no guarantees.

I was learning about VLS as I was living with it, and what started out as email updates to my family became a personal health blog.

Fast forward to 2023

In early February, I received the most incredible surprise. My goddess daughter (who has a bit of a tiktok following… almost 100k!) made a video about me, my health struggles, and the go fund me my family set up for me.  Within 12 hours of posting the video was viewed by over 3 MILLION people and shared 120k times! I was in shock for a couple of days. My precious goddess daughter took the time to share my story and in doing so, awareness of this hideous and little-known disease was spread around the world.

With the support of my goddess daughter, the generosity of thousands of supporters, and notes of love and encouragement from every continent, I suddenly found myself with a platform from which I can spread further awareness and help other women like me, and today I feel responsible to do just that.

That’s why I formed The Fairy Goddess Mother Project (FGMP) — a Vulvar Lichen Sclerosus (VLS) Awareness and Patient Advocacy Group — Because every woman deserves to live a pain-free, empowering and satisfying life.

FGMP is 501c3 nonprofit organization eligible to receive tax-deductible donations, 100% of which will go toward the organization’s mission.

• Increasing awareness – Empowering women by increasing awareness of the disease and its symptoms is PRIORITY NUMBER ONE. If caught early, this disease can, in most cases, be easily controlled with a topical steroid.

• Providing support for women already diagnosed with the disease, whether it be help finding a provider or financial assistance for treatment (including emotional/mental healthcare).

• Supporting patient’s efforts to participate in domestic clinical trials (NONE of which have adequate funding to host participants)

We are in the process of putting together a Medical Advisory Board (MAB) whose guidance will allow FGMP to make informed decisions in developing programs to best serve our patients.

For more information on The Fairy Goddess Mother Project and how you can help women with VLS reclaim their lives, please visit our website, or contact me directly any time.

-carol “the fairy goddess mother” davis

https://www.fgmp.org