Tag Archives: Turner syndrome

Understanding the world of rare diseases

Rare disease image collage

Consider this: It takes an average of eight years for someone with a rare disease to get a diagnosis. Many adults have endured symptoms for decades before finding out what’s wrong with them. Even with a diagnosis, their challenges may not be over. The world of rare diseases is often complicated and misunderstood.

Her childhood was plagued by ear infections. The diagnosis was a rare genetic disorder called Turner syndrome

Brooke Caron, Turner syndrome

As a little girl, Brooke Caron had one ear infection after another. Ear tubes were a mainstay of her childhood. All those infections led to a condition called cholesteatoma, which is a type of cyst in the middle ear. They also affected her hearing. Surgery corrected the problem for the most part, but not until she […]