We’ve come to know that being ‘rare’ isn’t always a good thing

When I was a kid, still waiting for my diagnosis, I remember overhearing doctors say, “It might be an orphan disease,” “It could be rare,” “This might be a special condition.”

At that time, and even shortly after my diagnosis, I didn’t understand what they meant. I was confident that once they gave my condition a name, I’d finally have answers and a treatment plan. My problems would magically (or chemically, I should say!) disappear.

But reality turned out to be different.

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What comes with a rare disease?

We’re used to hearing the word “rare” in a positive sense, as something luxurious, valuable, or unique. When it comes to myasthenia gravis (MG), unfortunately, “rare” means something else entirely.

A rare disease is a complicated disease. Because it doesn’t affect many people, it has less research, fewer specialists, and limited resources.

In Algeria, where I live, having a rare disease also means I won’t be a healthcare priority. Finding my medication can take months of searching, and even then, availability is never guaranteed. A disease can be serious, even life-threatening, but if it’s rare, it gets less attention — no matter how much we need it.

Having MG would have been terrifying for me if the internet didn’t exist. How would I know which symptoms are normal and which are signs of a crisis? How would I have connected with other MG patients around the world, learning from their experiences and gathering the tips that push me forward every day?

In my own neighborhood, I don’t know a single person who’s even heard of MG.

Beyond the medical challenges, I also face the struggle for understanding. How can family, friends, or colleagues truly support me when they’ve never even heard of my disease? How can they relate to something they don’t see, don’t understand, and can’t experience firsthand?

So in the scant hours before Rare Disease Day, I want to highlight a truth that’s often overlooked: Rare can be terrible.

Is there a way to live better while being rare?

For me, the answer is yes.

I’ve learned to embrace the challenge. I find joy in discovering new ways to live, in adapting, and in exploring my passions despite the limitations MG imposes on me.

Having a rare disease also makes me an advocate, whether I planned for it or not. Because my condition is so unknown, people are often curious, which gives me a chance to educate and raise awareness.

By simply talking about MG, I’ve helped two people in my network recognize their own rare disease symptoms and seek a diagnosis. That, to me, is proof that sharing our experiences can make a difference.

Together, we can make rare conditions less rare. We can build stronger communities and ensure that people with rare diseases don’t feel completely alone. By speaking up, we can make our existence more visible and help others understand the daily realities of living with a rare condition.

Will we ever have enough influence to affect medical research? I don’t know. But I hope that one day, rare diseases will become a priority in medicine, and we’ll no longer be overlooked.

Until then, we keep fighting — because even in our rarity, we are not alone.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.