Imagine that all of a sudden, your world stops.
Your family’s focus becomes a single, life-threatening topic. Home becomes the only place that is safe or manageable. Your physician is on speed dial. Doctors’ offices are the only place you have been in a while.
You monitor symptoms, wondering if one will lead to more. You think, “This will pass soon,” but weeks, months, even years drag on. Your only hope for change is out of your control, resting with specialists. Questions linger.
Rare Disease Day is celebrated each year on February 28 to raise awareness and celebrate the many faces impacted by Rare Diseases.
Every day life with a rare disease can be challenging. A rare disease during the pandemic has been something new and different. As we hope our global pandemic comes to a close, remember that rare diseases surround us.
Our Kelsey is our reason and our rare. We love her and thank you for supporting her rare.