The Vitiligo Patient Journey - Episode 7
Tarasha, a patient with vitiligo, shares her story to help aid dermatologists and other physicians who treat people with the disease, and highlights the importance of transparent communication.
Heather Woolery-Lloyd, MD: This is one question that I am dying to ask you because I want to be a better doctor. What advice would you give doctors who are treating patients with vitiligo?
Tarasha: Don’t do what my dermatologist did and give minimal information. If it is something that you know about, give all of the information to a patient that you possibly can. Don’t minimalize it. Tell them the risk from good to bad, from high to low, and everything in between. Don’t skim over anything. Don’t make them ask you questions about what you’ve told them versus them asking you questions about what they want to know.
Heather Woolery-Lloyd, MD:Have you accessed any resources for vitiligo?
Tarasha: I haven’t looked into any resources for vitiligo. The university in my city has a study, but I don’t know if I want to be a part of it. There is information about it on the internet, but I know there is more to understand about it than what you read online. If you don’t have anyone to actually explain things to you, it’s harder.
Heather Woolery-Lloyd, MD: What we need to do as dermatologists is really listen to our vitiligo questions, spend time making sure every single question is answered. It is a confusing disease. We need to listen and educate without minimizing it. You didn’t know that you were going to depigment so quickly.
Tarasha: In June, I took pictures of my legs and they had little splotches here and there. By December, my legs had no pigment. My melanin was completely gone. It slowly affected my body, and my face was the last thing it reached.
When it gets warm, though, my face is the first thing to repigment. Maybe that is a study that could be done. If it’s your last place to depigment, is it going to be the first place to repigment when the weather does get better?
Transcript edited for clarity