Why We're Starting This Blog
There's a lot that lives in my head. The questions. The fear. The thoughts that feel too strange or too dark to say out loud. If you're a parent or a patient living with a rare disease, I suspect you know exactly what I mean.
I also have experience, the kind you only get by living through this, that might help someone else. And I've come to believe a lot of us are carrying the same unspoken thoughts, quietly, alone. So I thought:
What if there was one place for all of it? Our stories, our tips, our guides for how to actually navigate life with a rare disease. From one patient to another. From one parent to another.
That's what this is.
This is a safe space. That means you can ask the hard questions and share honest answers without judgment, the scared thoughts, the angry ones, the ones that don't sound hopeful. You don't have to perform positivity here. What we won't allow is meanness, cruelty, putting each other down. The line isn't between positive and negative. It's between honest and unkind. Everything here should come from a place of helping, never harming.
This blog will follow the whole arc of what living with a rare disease actually looks like: from diagnosis, through the daily grind of care, to the hardest parts, including mourning a loss. There's so much people go through in this world that makes them feel like they're the only one. We don't want anyone to feel alone in it, because there are so many stories to tell, and yours might be exactly what someone else needs to read today.
While most of these stories will start with ALD, this space is for anyone touched by rare disease. Moms. Patients. Caregivers. Even the providers who show up for our families every day. If you've lived any part of this, this is for you.
We're so grateful that the hosts of Messy Medical Moms will be some of the first voices joining us here, and we hope many more of you will too. You never know who's going to read your story on the exact day they need it most.
I hope you find something here that helps. I hope you'll join us. I hope you'll become part of this collective movement, because this community only gets stronger the more voices we share and amplify, together.
Want to share yours? We'd love to hear it, just email us at info@cureald.org.
Follow @curealdtogether and @messymedicalmoms on Instagram
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