National Scleroderma Awareness Month

June is National Scleroderma Awareness Month.

Sclero-who? I know. Strange word, rare disease, no celebrity spokesperson. Booo-ring. But this is an awareness month so there's no better time to be aware.

Rather than quote a bunch of statistics and use big medical words that make sense to no one, I'm going to tell you a little bit about how scleroderma affects my life.

My mom has scleroderma.

It's a chronic autoimmune disorder that is characterized by the hardening of the skin and/or internal organs. The mild version is debilitating, the severe version can be fatal.



Diagnosis

Back in 1993, my mom was diagnosed with scleroderma after she presented with some crazy shit going on with her hands. Numbness, whiteness -- it was definitely not normal. The scleroderma diagnosis didn't come easy, but after a battery of tests and doctor visits, it was official.

Based on her symptoms (and the general lack of research/knowledge about scleroderma), my mom had about a 20% chance of survival past 5 years. Even those of you who suck at math know that it's been more than 5 years since 1993, so she's thankfully surpassed that morbid prediction.

At the time though, there was no way we could know when and if scleroderma would be fatal to her. She had three children under 10 at the time, so I can only imagine what a devastating diagnosis this was.

She and my dad sat us kids down one evening to tell us that "mommy's sick." I don't remember much of the conversation except for this exchange:

Me: Mom, are you going to die?
Tactful as ever.

Mom: [pause] Well, honey... I'm not planning on it.

That was good enough for me! Kids are so stupid, but can you really think of a better answer to that kind of question?



Growing Up

The shitty thing about scleroderma is that people rarely just get scleroderma. In addition to scleroderma's common Calcinosis, Raynauds, Sclerodactyly and Telangectasias, my mom also has many more ailments I can't keep track of. (Not to be calloused about it; it's just true.)

This meant that my mom was tired a lot, couldn't walk up and down stairs too much, and was in pain from stiff joints.

I don't know why, but her physical inability to do laundry is what I remember so clearly about growing up. Aside from the laundry being all the way down the stairs in our basement, my mom couldn't lift the laundry basket either (her arms wouldn't go that high back then). Guess who did the laundry for our family?

Me -- I swear.

My mom made me a cute, little color-coded chart so I knew what buttons to push for different load sizes and cycles. It was little things like that -- pitching in around the house more, not expecting my mom to take me shopping for 3 hours at a time, being quiet while my mom napped during the day, parking in the handicap spaces on her bad days -- that served as the reminders that my mom is not a healthy person.



Now

She'll never be healthy, but my mom is doing great. She's doing a hundred times better than she was when I was younger.

Oh, and looking at her? You'd have no idea that she's the least bit unhealthy.

Which... can be awkward. So many times, my mom has made small talk with strangers who end up saying things like, "At least we've got our health!"

Oops.

But other than those uncomfortable situations, scleroderma has become a manageable disease. It's still a struggle for her, but as far as this disease goes, we've got it GOOD.



Awareness!

• Learn more about scleroderma from the Scleroderma Foundation, Wikipedia, NIAMS
  
• Join the Facebook group
• Donate to the Scleroderma Foundation
  
• Link to this post
• Write a quick post about how June is National Scleroderma Awareness Month just by copying and pasting these bullets
  

Anyway, that's my scleroderma story. Please, please feel free to ask any questions about it!