Wednesday, June 25, 2014

Vitiligo-My Skin Disease

I recently read an article on for World Vitiligo Day.  It's a great article with some basic info about how it affects people.  Since I am one of the 100 million people worldwide that has this skin disease, I want to share how it affects ME.

Vitiligo is when the body's pigment cells stop producing melanin, leaving colorless patches.  It can spread, stop, and at times reverse itself.  I have had all 3 of these happen, but it's currently in the spreading stage.

I first noticed vitiligo when I was a young teenager.  There is no definite cause of this disease, but doctors think it's from either an auto-immune disease or it can be hereditary.  When I was 8 yrs old, I had a terrible auto-immune disease called Kawasaki Syndrome.  I've had side effects from this disease and I truly believe that's what caused my vitiligo.

I despise summer.  Living in Texas in the summer requires you to wear shorts, flip flops, and short sleeved shirts so you don't pass out from the triple digit heat.  Thus, making my vitiligo noticeable.  I tan very easily, especially on my arms, which makes it even MORE noticeable.  That's one reason why I love winter...I can stay covered up!

I have "spots", as I call them, all over my body.  It's on my feet, legs, torso, arms, hands, and even my face.  I know it can also spread to my hair, but I have not had that happen yet.  I do get quite a bit of stares, especially during summer.  Yes, I notice every stare because I am so self-conscious about it.  I can cover up the spots on my face with makeup, but the spots are too extensive on my body to use makeup on all of it.


Arm-see how tan half of it is?


Adults don't ever say anything to me unless they know exactly what I have.  Kids, on the other hand, say things to me all the time.

"What happened to your skin?"

"Why is that part brown?"

"Does that come off?"

"Do you have paint on your skin?"

I'll admit sometimes it does feel hurtful, even though I know no harm is meant.  I always respond with the same answer "God made me this way."

Because I am so conscientious about my skin and how the sun affects it, I take extra care with it.  The places that has no pigment also has no protection from the sun, making those spots extremely sensitive and burns easily.  The more I am out in the sun without protection on the parts of my skin that is pigmented, the higher the chances of those parts to lose the pigment and make more spots.  I make sure I always load up on the sunscreen.  I am adamant about my family putting on sunscreen as well.

Recently, my dermatologist recommended HelioCare, a daily supplement that protects your skin against the skin.  It's almost like sunscreen in a capsule.

I also use Elta MD as my daily sunscreen.  It has a higher amount of protection from UVA and UVB rays.  Plus, it has a higher percentage of zinc oxide, which is the ingredient that really protects your skin.  I put this sunscreen all over my face before I put on makeup and it's like putting on another moisturizer.  I love it!

Both of these products are not cheap, but cheaper than having to pay for treatments from skin cancer or other skin diseases!  My dermatologist said clothing will also be important for protection.  I love to wear 3/4 length sleeved shirts.  You can bet when I go to the beach this summer, I will be the one under the canopy with a hat, glasses, and cover up!

I completely appreciate family and friends that don't even pay attention to how I look.  I don't mind questions at all, but I don't like stares.  I don't like the way I look, but it's who I am.  So, next time you see someone with a skin disease like vitiligo, don't be afraid to ask a question.  And always protect your skin!!!

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