Rare but real: My journey with a rare disease | Read now

Today is Rare Disease Day, and as someone whose life's work has been dedicated to researching and developing treatments for a wide range of conditions, this day carries a deeply personal significance for me.

Rare diseases don’t just affect patients in hospitals; they impact colleagues, friends, and family members in ways that aren’t always visible.

I have Ménière's disease, which is a rare, long-term, progressive inner ear condition that causes severe vertigo episodes, ringing in the ears, balance problems, drop attacks, and hearing loss. The attacks can be sudden and severe, causing vomiting, pain, and a complete and debilitating loss of balance.

The incidence of Ménière's is between 1:1000 and 1:2000 of the population (depending on the source) and affects about 615,000 people in the United States, or just 0.2% of the population. Like so many rare diseases, Meniere’s has no cure. And the path to diagnosis is long, exhausting, and anything but straight—while deciphering a workable treatment plan is equally twisty due to the disease’s unpredictable nature and symptoms that can be linked to other underlying conditions.

Despite the challenges and the rarity of a Ménière’s diagnosis, my story is just one example of how rare diseases quietly affect people all around us, often in ways that go unseen.?

After years of battling this condition, I am now happy and thriving. I'm proud to continue my work in research now at Medable, whose mission is to enable access to research for more patients worldwide.

In this op/ed, Medable’s VP, Cindy Howry, MS , talks about her health journey with a rare disease and how this experience has shaped her professional mission to ensure every patient matters and every patient has the opportunity to fight back against disease.

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