The Beautifully Unblemished Vitiligo Support Group (BUVSG) was founded in 2018 in Florida, United States. In this column, Tonja Johnson, the founder and support group leader of BUVSG, shares her experiences with vitiligo to educate dermatology nurses and nurse practitioners. The Beautifully Unblemished Vitiligo Support Group helps individuals with vitiligo through various media platforms, in-person meetings, the promotion of clinical trials, patient surveys, treatment options, and research information. The goals of BUVSG are to correct insurance labeling of vitiligo as a disease and not a cosmetic condition, to have funding for research to help find a cure and for support group programs, and to bring awareness of vitiligo to all communities within the state of Florida. Ms. Johnson can be reached at mailto:[email protected] or mailto:[email protected]. More information for patients and nurses can be found on the BUVSG website, https://www.beautifullyunblemished.com.
1. Tell us about your diagnostic journey and what you experienced leading up to your diagnosis with vitiligo.I was 41 years old when I noticed a small, white spot on my leg. Soon, I started seeing more spots appearing on my arms and legs. I decided to see a dermatologist shortly after that in 2014. Hearing the words "you have vitiligo" was devastating, and I wondered, "Why me? Why this disease?" I recall leaving the doctor's office feeling discouraged as they didn't provide me with any information about vitiligo, just a few prescriptions to use, which at the time were very expensive. For about 3 years, I would cover up by wearing makeup and long-sleeved shirts because I was ashamed and did not want anyone to see my skin, but soon, my hands would start 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 child, other children teased me for having dark skin. Now, as an adult, I was losing the exact color I had worked so hard to love, which sent me into a deep depression. I had difficulty walking in the mall and going to public places because individuals would stare and whisper, which was the worst feeling. I have experienced cashiers not wanting to hand me my change or being hesitant to give me my bag as if I were contagious or had some type of leprosy.
2. What advice would you give to dermatology nurses and nurse practitioners who see patients with vitiligo?
* The need for social support
* Understanding the impact of vitiligo on the patient
* Spend adequate time with the patient to discuss treatment options and possible side effects
* Hearing "vitiligo is cosmetic" can be very dismissive to the patient
3. What do you wish more dermatology nurses and nurse practitioners knew about vitiligo?
* What causes vitiligo
* How it affects patients emotionally and mentally
* Treatment options
4. Any tips you have learned that would help others with vitiligo manage it?
* Being a part of a support group/community is vital and life-changing to those living with vitiligo. It enables people with vitiligo to have the ability to talk to others and not feel alone. Most people will not know how to connect with someone going through the same thing.
* Many people isolate themselves because of the disfiguring effects of vitiligo. Many individuals were diagnosed when it was not fashionable to be different. Many individuals struggle to accept having vitiligo and love their skin.
* Groups like BUVSG are making a difference in the vitiligo community. Our primary mission is to help individuals with vitiligo have a better quality of life. Patients and caregivers must have information on support groups and resources at the time of diagnosis.
5. Did you receive any well-meaning advice that you would not give to other people with vitiligo?
* Yes, it is just skin color you have lost, and to get over it.
6. What resources does BUVSG offer to patients?
* BUVSG offers mental health resources, help to find dermatologists, seminars, workshops, research information on clinical trials, treatment availability, and disease coping skills.
7. How could nurses get involved with BUVSG?
* Nurses could get involved with BUVSG by sharing information with patients that a support group community in Florida assists patients with vitiligo. Nurses could also educate patients about medication options and their possible side effects. Caregivers of both child-age and elderly patients with vitiligo are especially in need of more education.