Today we’d like to introduce you to Tonja Johnson.
Hi Tonja, so excited to have you with us today. What can you tell us about your story?
I was 41 years old when I noticed a small white spot on my leg. Not long after more spots appeared on my arms and legs. As they grew in number, I decided to see a dermatologist, who specialized and focused on skin conditions. When I heard, “You have vitiligo” I was devastated and wondered, “Why me? Why this disease?” I recall leaving the doctor’s office feeling discouraged as there was no information given to me concerning vitiligo. No pamphlets or a website I could visit to gain more information. Just a few prescriptions to use which at the time were very expensive. For three years I would cover up by wearing make-up and long-sleeved shirts because I was ashamed and did not want anyone to see my skin, but soon my hands began turning white along with my face. I did not like what I looked like or have any confidence; my self-esteem was slowly slipping away. As a dark-skinned African-American woman, I had been teased as a kid for having dark skin. Now as an adult I started losing the very color I had worked so hard to love. This sent me into a deep depression. I remember having a difficult time walking in the mall, going out to public places, and seeing individuals stare and whisper. That was by far the worst. I have experienced cashiers not wanting to hand me my change or hesitate to give me my bag as if I were contagious or had some type of leprosy. For this reason, I decided instead of walking away hurt and frustrated, I will use these opportunities to educate and empower others about Vitiligo.
Where I am today, I am the founder and patient advocate for Beautifully Unblemished Vitiligo Support Group, Inc. I founded BUVSG due to my own struggle and frustration to find a support group here in Florida. I thought if I am experiencing this, I am sure many others are experiencing the same. Beautifully Unblemished is committed to promoting Vitiligo awareness and providing valuable resources to help people deal with the impact that vitiligo has on their lives. They also provide a safe environment to share emotions and have discussions with people dealing with many of the same issues. Serving as Florida’s sole Vitiligo support group, BUVSG’s mission is to increase public awareness of Vitiligo as well as offer support services to patients and their families through education, healthcare, and resources. Since the foundation of BUVSG Inc. the organization has continued to expand, strengthening bonds within the group and our communities as we work together to eradicate the social stigma surrounding Vitiligo.
BUVSG offers patient support through the following ways:
● In person support group meetings throughout Florida
● Providing information concerning vitiligo to our group members through our website, social media platforms, and newsletters
● Promotion of clinical trials, patient surveys, treatment options, and research information
● Classroom education for Elementary/Middle/High school aged students living with Vitiligo
● Youth retreats focused on mental health, acceptance, and self-confidence
● Mental health counseling and mindfulness training
Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
It was not a smooth road, there have been many struggles along the way. The initial struggles were dealing with vast pigment loss so quickly. Trying to explain what was happening to colleagues, family, and friends, as well as trying to comprehend all that was happening to me. Mental health challenges, self-esteem, and feeling ugly were additional frustrations I have faced and continue to face. It has been challenging work to accept the changes, embrace my new skin color, and educate others on Vitiligo. What initially caused so much pain, now brings passion as I am inspiring others to have a better quality of life living with Vitiligo.
Appreciate you sharing that. What else should we know about what you do?
I am known for being a creative and connector. I serve as founder and patient advocate for Beautifully Unblemished Vitiligo Support Group, Inc. Professionally I am embarking on a new career to work as an Executive Assistant for a local non-profit organization. Previously, I worked for 23 years in Public Health Management and for the past 8 months while transitioning careers I taught 1st graders at a local elementary school. Teaching 1st graders brought me a lot of joy and inspiration and the ability to pour into these little one’s early life.
Is there any advice you’d like to share with our readers who might just be starting out?
My advice for those starting out is to find meaningful support whether it is a family member, counselor, or support group. Being diagnosed with Vitiligo you experience various stages of grief. Although, Vitiligo is not something that causes pain it can cause emotional and mental challenges. Losing your pigment, the color you have grown to love can be difficult especially as it progresses. Be true to yourself, affirmations are key to getting through the psychological effects of having Vitiligo. Learn at your pace and embrace the changes that Vitiligo can bring. Love yourself unconditionally! Be strong and fearless! Most of all love the skin you’re in!
Contact Info:
- Website: https://www.beautifullyunblemished.com
- Instagram: https://www.instagram.com/beautifullyunblemished
- Facebook: https://www.facebook.com/beautifullyunblemished
- Twitter: https://www.twitter.com/beautifullyunbl
Image Credits
Failla Photography
Ginger Williams Photography
