Written by Jennifer Peterson

As a young adult, this journey was not something I ever imagined taking, and it certainly was not for the faint of heart. Being diagnosed with idiopathic intracranial hypertension changed my entire life in a matter of months. While other twenty-two year old’s graduated college and prepared for their careers; I was lying in a hospital bed, in another state, having multiple life-saving brain procedures back to back.

I would go on to have approximately ten major brain surgeries in under three years. I lost so much in that time; my youth, my vision, my career, my friends, and even some of my family members. I used to think that having a rare disease somehow stole my freedom away. Feeling like a bird with clipped wings, it became so easy to be bitter at times.

But one day I realized that all of us going through these hardships serve a truly unique purpose, if only we have the grit to persevere and rise to the challenge. When faced with adversity, we have a choice to make. So everyday I make a choice to live my life fearlessly and without regret to show everyone that we are strong, we are enduring, and we are resilient. There is so much that we, as rare disease patients, have to offer this world. It’s a tough road, but we can choose to walk it with pride and pave the way for others to make their journey easier. We just need to remember that while it is true that separate we are rare, together we truly are strong.