Wednesday, June 10, 2009

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!



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

5 comments:

Marie said...

So sorry your mom has sclerderma. I actually had never heard of it till you mentioned it in your post.

I'm just glad she beat the odds and is doing even better today. I hope she has a heck of a lot more awesome days to come for many, many years!

Molly said...

I'm glad your mom is doing well! And thank you for sharing the information and spreading the word!

Anonymous said...

Hi Elle, Sorry to hear about your mom. FYI, the actual URL to the Scleroderma Foundation's cause on Facebook is:
http://apps.facebook.com/causes/297322/66716251?m=6d54c0aa

You have linked to Matthew Mace's cause, which is part of the Scleroderma Foundation's TriState Chapter. We also have a page on Facebook at
http://www.facebook.com/group.php?gid=46800128263

Hope to see you there.

Audrey said...

Elle - Your mother is a very strong person, and with her sense of humor, you would never in a hundred million years that she feels pain. You mother is a joy to be with and I am so so glad for you and your family her health has improved and she is here to celebrate life with you!

I am still in total and utter disbelief that you did the family laundry. No wonder you don't want to do it anymore!

hautepocket said...

Is it weird of me to say that I am in love with your mom? Like, if she were a dude I would totally want her. She is hilarious! Thanks for the post and I'm glad she is doing well.

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