My entire life I thought I’d be the only person in my family who has Vitiligo. Before having my daughter, the thought of my future children getting Vitiligo only crossed my mind a handful of times. It wasn’t until I was pregnant that I truly realized my children could have Vitiligo. It is very possible that I will pass this autoimmune disease gene to them and one day they will wake up with white spots like their mother. This thought was terrifying to me. My sweet, innocent daughter would one day look in the mirror and ask me why she didn’t look like all of her friends. She will tell me that the kids at school call her ugly names. She will feel insecure and hurt. She will be crushed. Will my children get Vitiligo? A thought that continually haunts me.
Will my children get Vitiligo?
I was clearly projecting my feelings onto my daughter based on my very specific experience of living with Vitiligo. My first white spots appeared on my knees when I was seven years old. Until becoming a mother myself, it never occured to me how my parents could have been affected emotionally throughout this process. Twenty-one years ago there wasn’t a lot of available Vitiligo resources or community groups. I grew up completely alone with this autoimmune disease. It wasn’t until a few years ago that I met and spoke with a woman who also had Vitiligo. That interaction opened up unimaginable doors for me; it opened my eyes to a Vitiligo community that I didn’t know existed.
If my daughter or future children get Vitiligo, at least I know they will have supportive parents with over twenty years of forthcoming medical knowledge to look to. My children will also grow up with a strong Vitiligo community. They will have resources and conferences, kid groups and pen pals.
They will have the option of Vitiligo camouflage makeup and a variety treatments.
Who knows? Maybe there will even be a cure.
One of my favorite Vitiligo support groups is specifically meant for children with Vitiligo between the ages of 3 and 12 years old. Vitfriends Pen Pal Patch introduces children living with Vitiligo to other children around the nation living with Vitiligo. The kids are also matched with people of the age of 10 who can offer guidance and support. Vitfriends also holds an annual World Vitiligo Day Conference across the United States. The 2018 World Vitiligo Day Conference focused on “Children, Research, and a Hope for the Future”. Experts in the Vitiligo field shared their research and findings. The conference brought together over twenty children with Vitiligo. The hope is that these children will grow up feeling connected and empowered. They will not feel alone and hopeless.
According to Dr. John Harris, director of the Vitiligo Clinic and Research Center at UMMS, a parent, sibling, or child has a 5% chance of getting Vitiligo. 1 out of 100 people are at risk of developing Vitiligo. This means my daughter’s chances of developing Vitiligo are 5 times higher than the general public. This also means that my siblings are 5 times more likely to get Vitiligo in their future, yet I am currently the only person in my entire family with Vitiligo. Will my parents ever get Vitiligo? My siblings? My daughter? My future children? Who knows. An uncomforting answer, but that is the hard truth. The fact that I remain the only one in my family with Vitiligo gives me hope for my daughters future. And if she does, all the medical advancements and support communities that have become available to children and adults give me hope as well.
Tiffany Grant is a freelance writer, she has had Vitiligo for 20 years. Her first spots appeared on her knees at the age of 7. Tiffany got the tattoo “It’s called Vitiligo” a few years back and had her story shared via many sources including Women’s Health Magazine and the Daily Mail. From Brooklyn, NY. Tiffany advocates and raises awareness for the autoimmune disease, Vitiligo.