This year’s World Vitiligo Day 2018 Conference was the largest Vitiligo meeting ever with over 300 attendees.
beautiful people with Vitiligo
incredible children with Vitiligo
The Vitiligo Community
The Vitiligo Community is like no other community I have been a part of. When you walk into the room (with who are ultimately 300 strangers) you are immediately welcomed into a family. We are a family. We are a family who encourages, supports, and accepts each other for who we are. When we are all together, we are a powerful and unstoppable force. We have all at one time felt isolated and alone. We have all had to cope with our disease. We all have struggled (and many still do struggle) to accept that our appearance is different from everyone else. We have all shed tears hoping for a cure that has not come. But we are also stronger now, and we are not alone. We have over 300 people we can reach out to and connect with and that is a very special feeling. We are unique. We are the one percent.
April Sawyer, the founder of Pen Pal Patch, was the first to speak about the children with Vitiligo and their parent’s voice. As she was speaking, I immediately felt the tears building up behind my eyes. I felt as if she was speaking directly to the 7 year old Tiffany with small Vitiligo spots on her knee. Children with Vitiligo have a safe place within this group. They have a pen pal, they have journals, they have a personal news paper, they have a facebook page dedicated to the group, they have their parents, but most importantly, they have each other. They don’t have to go through this alone. As April was speaking, my inner voice was wishing I could be 7 years old again, that I could go start my Vitiligo journey all over again and be a part of the Pen Pal Patch group.
The conference opened my eyes to a whole other perspective. The parent’s perspective.
A large portion of the conference was dedicated to the parents of children with Vitiligo. Their journey shouldn’t be forgotten. The parent’s are struggling with their own emotions while trying to figure out how to guide their child through life with Vitiligo. This cannot be easy. Thankfully, people like Dr. Lisa Schuster, PhD, a child psychologist, and 25 year patient of Vitiligo addressed how to support the children. She explained how it’s important to take the child’s lead and allow them to feel comfortable in their own decisions. To be in the moment and worry less about the future, and to role play, role play, role play. The parents were taught that it is imperative to anticipate situations with their child to prepare and educate them so they can educate others.
The awe inspiring Dr. Pearl Grimes, MD spoke about having to open an interactive dialogue with your child. Dr. Grimes mentioned how we live in an ascetically driven society. Because of this, Vitiligo can become a psychological burden. There is an emotional impact on Vitiligo patients, but you should not define yourself by an external condition. Dr. Grimes impresses upon parents to reassure their children of their self worth, let go of their own shame and guilt.
These children are the future. We must continue to guide them towards self- acceptance. We must educate them on the disease, the research, and the treatments so that they can educate others and spread awareness.
The Research and Treatments
With our fab four squad of doctors: Dr. Harris, Dr. Elbuluk, Dr. Pandya, and Dr. Grimes and their dedicated teams, I’m confident Vitiligo research will be making leaps and bounds over the next several years. Our doctors and their teams work around the clock. When one question is answered about twelve more questions arise, but this does not discourage the effort. The goal is to stabilize and regiment the skin. The goal is to treat the whole body and stimulate skin cells. The goal is to prevent memory cells from spreading future Vitiligo spots. This can happen with a combination of photo-therapy, topical creams, and diet/supplements. There are several promising forms of treatment for the skin: blistering the skin to get an accurate count of T cells and inflammatory proteins; The Dead Sea therapy using photo-therapy and minerals; and treating the patient not just the disease with psycho-social interventions, these are only some of the current strategies and treatments being studied. Without groups like the Global Vitiligo Foundation or the Vitiligo Research Foundation, without our devoted doctors, without the funding from sponsors and with out community groups like Vit Friends, none of this would be possible.
Doctors who can… dance?!
It all happened at the 2018 World Vitiligo Day…
As Wallace Henry from the DC Vit Friends group said,
“It is time to move awareness into action. It is time to use our group efforts and collaborate with our state and city legislators. This is the time for our voices to be heard.”
And to the most committed and faithful advocate of them all, to the only who has built the Vit Friends group when there was no other Vitiligo support group out there, to the one who puts these conferences together, and to the one who has created this magnificent family, to Valerie Molyneaux, we wholeheartedly thank you.
Next year, Vit Friends is taking the conference to Houston, Texas!!!!
For those of you who were not able to attend the 2018 conference at UMass Med, MA, I’ve included the live stream videos below.