Sometimes it IS a Zebra

My heart goes out to Christina Applegate. After five years of believing she had MS, I read yesterday that she’s now been told she was misdiagnosed. But her symptoms haven’t disappeared — she’s still struggling, only now she doesn’t know why.

Twenty years ago, we were there. Watching symptoms, taking tests, going from doctor to doctor and waiting for answers. It’s like a holding pattern – waiting to land and not knowing where you are headed and what to expect.

I was thinking about her and the frustration and worry she must be feeling and then my mind went somewhere unexpected.

Could she have ALD?

Women with ALD can experience neurological symptoms that resemble MS, including symptoms she’s shared like difficulty walking, balance problems, and muscle stiffness. Some women spend years searching for answers or receive an incorrect diagnosis – MS being top of the list.

Of course, I know absolutely nothing about Christina Applegate’s medical history, and I’m certainly not suggesting that she has ALD. But I can’t help wondering whether our rare (NOT so rare) disease has been considered.

Mostly, my heart breaks for her. Imagine finally having a name for what’s happening to your body, learning to live with that diagnosis, and then having the rug pulled out from under you. The symptoms are still there, but the explanation and potential treatments are gone. If there’s one thing us ALD folks understand, it’s the exhausting journey of searching for answers.

Christina, I’m rooting for you. I hope you find the answers, support, and peace you deserve!

And maybe, just maybe, stories like yours will remind the medical community to look beyond the obvious and consider the rare — Because sometimes rare isn’t as rare as we think!

Love, Jess

Find Your People — the first weekend of November

Registration for the ALD Connect Annual Meeting & Patient Learning Academy is closing soon, and I have one piece of advice: GO!

REGISTER HERE

Living with ALD can be lonely. Sometimes it feels like we’re speaking a language nobody else understands. But put a bunch of ALD families and doctors and researchers in one room, and suddenly you don’t have to explain everything. People just  get it!

There will be incredible doctors, researchers, and important information. There will also be breakout sessions and Ambassador Drinks and patient panels and an auction and even a little talk about life between appointments (I guess I should start prepping that one). But for me, the real magic happens in the hallways (and bathrooms — it is an ALD conference), over meals (and maybe a drink or two), and during conversations that turn strangers into friends.

We laugh, we cry, we share stories that would probably horrify people outside the ALD world. And somehow, we leave feeling a little lighter.

Community doesn’t cure ALD, but it sure makes living with it easier!

Registration is closing soon. Don’t miss the chance to find your people—or reconnect with the ones who already feel like family.

Hope to see you there!

Love, Jess

PS Did I mention that if you come you get to visit beautiful Salt Lake City!