Sharing burdens…

My left arm and shoulder look totally “normal”. At least, the skin there looks normal. It is unmarked by anything except age and the looseness resulting from shrinkage following my weight loss surgery.

My right arm and shoulder, however, look quite different. I have a rare skin condition there called lichen sclerosus et atrophicus (LSA).

I first noticed a strange-looking little patch of shiny, white skin when I was about 20 years old. Mama noticed it too, and I remember her being terrified that it was psoriasis. She took me to see a dermatologist, who performed a biopsy to make sure that it was not cancer.  Then he gave me the diagnosis of LSA and said that in all his years of practice, he had only seen a couple of cases.  Then came the parade of students, nurses and other lookers-on to view my skin, because, “This may be their only opportunity to see this condition.  It’s that rare.”  Several times since then, that scenario has repeated itself as doctors ask me if I mind their nurses and med students coming in to take a look.  I don’t really mind if medical professionals want to see it, as long as they treat me like a human and not just a disease.

Looking back, I wish it had been something as common and as treatable as psoriasis. I don’t minimize the seriousness of psoriasis; it can be a devastating condition. But at least people are familiar with the term, and there are treatments for it.

My condition is much less common, and much less treatable. There is no known cause, and the only known treatment is a specially-compounded testosterone ointment or cream which may or may not be covered by health insurance.  The testosterone treatment never helped me anyway, so it doesn’t matter that my insurance doesn’t cover it.

The affected skin does not behave like normal skin.  The LSA penetrates through to the deepest layers of the dermis.  When exposed to the sun, it doesn’t tan.  Sometimes it hurts.  Occasionally a patch of the affected skin will break open, but it doesn’t bleed.  It weeps.  And sometimes it itches, the kind of itch that makes me want to scratch at it with a fork!

The condition gradually spread down my upper arm and up toward my neck.  It expanded to roughly twice its original area when I was about 40 years old, I suspect due to my changing hormones around that time.  But that’s just a guess.

I am really fortunate as far as LSA patients are concerned.  Over 90% of cases are located on the patient’s genitalia, and the condition often impairs urinary/excretory and sexual functioning.  So I am blessed that it’s just on my arm and shoulder.

Why am I sharing all of this?  I guess I just needed to remind myself that we’ve all got something…some scar, pain, fear, disappointment.  Some burden we carry.  If I can be open about my burdens, maybe I can be more sensitive to the burdens of other people.  Maybe I can even share them.