I have had Vitiligo for about 10 years. I founded FOR THE LOVE OF VITILIGO MINISTRY, INC. in April of 2021. Vitiligo is depigmentation of the skin. I want to create Vitiligo Awareness and educate individuals about this auto immune disease. Vitiligo causes more than depigmentation. It can cause mental stress and other auto immune disorders.
Vitiligo is NOT contagious. There is NO CURE for any type of VITILIGO. It wasn’t until June, 2022 that the FDA approved a prescription treatment for non-segmental vitiligo to help regiment skin. This medication has alot of side effects and is very costly. This medication is not for me. For most people this is not an option or it did improve their skin. My daughter also has Vitiligo, therefore I believe it is hereditary. She used the prescription cream Opzelura and had no positive results. She got tattoos to help cope with her condition. I use my De-Pigmention patches and spots as a tool for Vitiligo awareness. I do not camouflage them but I do use sunscreen.
We with Vitiligo are human art canvases, each one individually unique. In this world today diversity is high on the list. I thank God that we are finally getting a voice. My advice to anyone with Vitiligo is not to be ashamed. There are support groups. If I see someone looking at my spots, I immediately tell them it’s Vitiligo and explain what it is. If I see someone with Vitiligo, I approach them and kindly ask about their skin condition.
Sometimes people have it and don’t know. Educating individuals is the key. Spreading Vitiligo awareness is my mission and purpose. I want every person in the world to know what Vitiligo is. And I want to help the ones that are self conscious or ashamed. I want to be the face for Vitiligo for the individual that can’t face VITILIGO!
I had only ever met one man with Vitiligo before I started to get a spot on my right hand. It took me forever to finally ask what had happened to his hands. And what did I ask?……”Did you burn your hands?” His reply was… “it’s just a skin condition.” So ,I still didn’t know. My medical doctor had told me what it was and I went to a dermatologist and was officially diagnosed on May 8th, 2015. I ended up in the ER on July 6th, 2015 at Wake Forest Baptist Hospital in NC where I was sent straight to The Comprehensive Cancer center for emergency surgery.
My which is now ex husband didn’t believe me and it took him two days to show up at the center. I had to have blood transfusions. My hemoglobin was 3.7 This was a near death experience for me just as it was in 1977 when I had open heart surgery for an ASD. I so believe that being so sick and stressed in 2014 is what caused my Vitiligo to start spreading rapidly.
I read that stress plays a huge part. So I really started researching Vitiligo as I was healing. I wanted to start a Vitiligo Awareness ministry then, but couldn’t due to the fact that I was married with a Foundation. I have messages from June 2020 where I was contacting Vitiligo Research Foundation’s. Exactly one year and one month later I got my divorce during a pandemic on Web X on my six Year anniversary! Now that’s a story!
So I got busy and set a goal for myself to start a Vitiligo Awareness and Education program and file to be a 501(c)3 non profit. I got my paperwork on April 22nd 2021 and got busy working. I was able to speak globally on zoom for World Vitiligo Day on June 25th, 2021. I was featured for Tough Skin out of Denver Co. Diversity Works Magazine did an article in October, 2021 for my ministry. I will be attending WVD 2023 in Atlanta, GA in June. I usually spend a couple of hours a day on social platforms for Vitiligo. I have people world wide asking for social support, advice, and just questions in general. I have several Vitiligo books that have been signed and mailed to me from authors. I love to read these books to children so that they understand and don’t bully others with Vitiligo.I also serve on the board for wigsforcancercharity.com. This is a ministry that gives free wigs away to cancer patients. I have helped with many charities and ministries over the years. I have this website, email, social platforms, fliers and materials that I use to spread awareness.
I accept donations provide materials, literature, attend festivals and conferences. I have PayPal and a donation button. I have Vitiligo Barbie dolls, crayons and coloring books to give to children with Vitiligo. I am working on my own line of t shirts, koozies etc. I have a resell shop where I re-purpose items and make jewelry to sell and give to the ministry. I have a small retro camper for festivals and events to raise awareness.
I am looking to plan a meet up in Myrtle Beach, SC and have recently started Myrtle Beach Vitiligo friends group. I attend cultural and international festivals to create public awareness. I am on several social platforms where I give support and advice to others dealing with Vitiligo. The stigma is real and easily causes mental issues. We are all in this together. I am open to any suggestions and or ideas as I grow this Ministry.I have a personal and private Face Book page for Vitiligo. I like my vitiligo team social platform because it’s about us and our same struggles. I can be also be reached on Instagram at #fortheloveofvitiligo. Keep checking back in as my ministry continues to grow!
Thank you and God Bless