National Rare Disease Day: Lupus (Guest Post)

by Amelia Old
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In support of National Rare Disease Day, blogger Karri-Leigh Mastrangelo from shared her story.

You can find Karri-Leigh on Twitter @karri_leigh


Just weeks after my first daughter was born here in Los Angeles, we packed up and headed to our old hometown of Boston.  My father-in-law was terminally ill, and we knew having the freedom to spend my maternity leave with our family during his final days was invaluable.

So, when I started waking up with sore wrists every morning, I kept things in perspective.  I paid attention to how I was sleeping, to make sure I wasn’t straining them.  No new mother ever has a free hand, but I tried to give mine whatever break I could.  I massaged them.  I stretched ‘em.  Still, no relief.

When I finally spoke up, my mother (a retired RN) suggested it might be tendonitis from holding the baby.  This seemed completely plausible, but somehow I knew it wasn’t the case for me.  My discomfort was mirrored, identical in both wrists.  I knew that if this were related to the position in which I was holding my tiny daughter, or her bottle, one side would be significantly more affected.  Back to the drawing board I went.


Some time later, back home in Los Angeles, I saw my general practitioner.  He said exactly what I suspected he’d say, which is just what my mother had suggested (typical).  Tendonitis.  Though he suggested a regimented schedule of Advil and icing, I skipped it.  I waited however many weeks it was that he wanted me to hold out before a follow-up visit and returned, still uncomfortable.  Leaning toward arthritis, he referred me to a rheumatologist.

Fast forward through my first visit with her, and the agony of waiting for test results that we all are too familiar with.  I have a vivid memory of working late in an edit bay at The Bachelor when her office called.  I excused myself, as an after-hours call from the doc is never good.  My bloodwork looked fine, she said.  No arthritis.  I did, however, have a slight positive for Lupus.

As anyone familiar with autoimmune disease knows, they are very difficult to diagnose.  Even the blood test I’d had was a slight indicator of the disease more than anything.  There were still several factors to be considered, over time, before a real diagnosis could be made.  Also of great significance was that I was still post partum, when anything you are already prone to can flare, so time alone may have healed me.  But it didn’t.

It was nearly two years of a watchful eye before my rheumatologist was 100% convinced that I have Lupus.  Though there is little I can do to protect myself against the toll the disease can take, I am thankful to finally call it by name, even if that name is one people have heard so little of that they are unsure of what it means or how to react when I mention it.

The bottom line is that I knew in my heart (and joints) that something wasn’t right, and wouldn’t let that be dismissed.  It isn’t always easy to trust your body first and foremost, but the alternative is a sad and dangerous one.

Today is National Rare Disease Day, intended to increase advocacy, awareness, support and education of such illnesses.  I hope that attitude continues for the next 364 days of this year, and onto the next.  And you can help.

Listen to your body, and encourage others to listen to theirs.  The secrets you hear may be the most revealing (and lifesaving) ones ever.

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