I first noticed odd shaped patches of skin on my feet and ankles that were totally white or pink, lacking pigment, when I was 12 (1967), at the pool. Some of the patches had spots of dark, tanned spots in the middle of them. I had no idea what this was. Someone told me it was from consuming too much vitamin C. Around puberty, I noticed the patches had appeared in my groin. By the time I was in college, there were small spots on my hands, which have grown larger and spread up the under sides of my arms. The patches have spread on my legs, as well, nearly totally covering my knees. By high school I had a name for this condition. It is vitiligo. Hardly anyone had heard of it, back then, except those who had it, at least among Caucasians. Whites can hide it more easily, especially those with pale complexion. There are also better make-up choices, for those who are sensitive or embarrassed. People can be cruel. I am fortunate. Mine has not shown up on my face, yet.
The disorder was cast into the spotlight when Michael Jackson took the extreme measure of bleaching his skin to ‘hide’ his vitiligo. The disorder is incurable. There are some treatments that claim to breakdown the barriers in the skin to allow the pigment to reenter the pale areas. These have sometimes painful side effects and risks. Plus, none of them prevent new areas of pigment loss from appearing. When my vitiligo started, not much was known about it. More has been learned over the decades, yet no doctor thought to tell me what caused or aggravated it or the nature of the disorder.
It was not until after I had nearly died from an allergic reaction to Vancomycin, the eighth drug I became allergic to, I broke out in hives for no apparent reason (Winter 2011). I finally visited an allergist in Philadelphia per Dr. Jonathan Cohen’s recommendation. She looked at me. She read my medical history. She said , “We could spend a pile of money testing for almost everything under the sun and still not find what you reacted to. You are allergic to all these antibiotics. It’s probably an autoimmune disorder. After all you have vitiligo.”
I said, “Back up. Back up. Back up. What do you mean I have vitiligo? What has that got to do with it?”
She said, “Well that is autoimmune. If you have one autoimmune disorder, the likelihood is you will have another.”
Me: “Since when have we known vitiligo is autoimmune?”
Dr.: “About 30 years or so.”
Me: “Why did no doctor tell me this?”
Dr.: Shrugs shoulders. Sends bill.
Since then I have learned that there are a whole host of diseases and disorders that are classed as autoimmune. There is some research that is even indicating that some percentage of Type 2 Diabetes is autoimmune. Most autoimmune diseases are predominantly hereditary, and, like the allergist said, if you have one, you are likely to have two. Yippee skippy! Things start to make sense. My mom had pernicious anemia which is autoimmune. My brother has ulcerative colitis, autoimmune. Several of our children and grandchildren have a variety of minor and major autoimmune disorders.