Just over a year ago, I attended my first vitiligo support group meeting in NYC – it was my first time attending any kind of vitiligo meeting. Today I’m a patient leader for the New York Vitiligo Community and consider the group a community of close friends.
The New York Vitiligo Community is headed by Dr. Nada Elbuluk from NYU Langone Medical Center and Dr. Beth McLellan from the Albert Einstein College of Medicine. Run by the two dermatologists and their medical interns, the group aims to provide an environment in which people can learn about vitiligo from medical experts, connect with others and talk about life with vitiligo.
As a patient leader, I help promote meetings by reaching out to dermatologist offices and spreading the word on social media. I also help brainstorm topic ideas for meetings and plan events, including our upcoming holiday dinner.
The vitiligo support group provides a place for connection and community.
I find these meetings to be very powerful. The vitiligo support group meets on a regular basis. Right now, we’re meeting every other month on the first Wednesday of the month. The group usually ranges between five and 20 people and friends and family of those with vitiligo are always welcome. Through these meetings, I’ve made some really wonderful connections and relationships. It is a nice feeling knowing that other people share your story.
Every meeting has a different theme but follows the same format.
We have a different theme laid out for every meeting. For example, November 2nd’s topic was vitiligo and its associated diseases. The meeting starts off with everyone giving a small introduction of themselves – including name, how long they’ve had Vitiligo, and any other information they’d like to offer. The introduction is followed by a presentation on the meeting’s topic given by one of the medical students. Then there is a question-and-answer session with Dr. Elbuluk and Dr. McLellan. This is followed by a brief presentation of research updates. The meetings always end with social time for connecting and talking.
NYC’s vitiligo support group is unique because it’s run by medical professionals.
I find the NYC meetings to be particularly special because they are run by two dermatologists and their medical students. Dr. Elbuluk and Dr. McLellan take time out of their busy schedule to educate and support people with vitiligo. We receive updates on vitiligo research and treatments and get a medical presentation every meeting. Having the knowledge of a medical team behind each meeting is like getting undivided attention from your doctor while surrounded by people just like you.
To learn more about the group, find them on Facebook at @nyvitiligo or New York Vitiligo Community or email the group at firstname.lastname@example.org. If you’re in New York, join the group for their next meeting on Thursday, Jan. 5 from 6:30-8 p.m. on the 11th floor of NYU’s Ambulatory Care Center at 240 East 38th Street, between the 2nd and 3rd avenues.
Tiffany Posteraro Grant is a New York based entrepreneur and owner of Perfect Penguin Consulting, a digital dating consultation company. In her free time, she enjoys fitness, reading and time spent with her husband and two corgis.