When you or your child receives a rare disease diagnosis, your entire world changes. Life as you know it is dismantled and your carefully-crafted dreams appear derailed. You encounter tumultuous emotions that turn your world upside down. For patients, their relationship with their bodies radically change. In fact, a dissociation takes place. The body they once accepted as their own, as a servant that should obey, function, give pleasure, is now a body that has betrayed them and dictates an unsavory set of terms. For caregivers, you are no longer in control and are now face to face with the promise of your loved one’s biological dysfunction and physical deterioration.
Initially you recognize everything you have lost and are going to lose. Fear floods in. Fear of the unknown …and the known. Every doctor’s visit, every test result is a blatant reminder of each step closer to a doubtful future. But then you wake up. You finally open your eyes and see how beautiful life is; how much you want to live — how much you want your loved ones to live to share life’s beautiful moments with. You realize the need to stop wasting precious time mourning the inevitable and to become present with every smile…every joke…every moment…every breath. At some point, the love becomes greater than the loss and courage is found.
What is courage – as defined by the rare disease community?
Courage is sitting in a doctor’s office and listening quietly to words that proclaim the end: ‘not compatible with life’, ‘the condition is progressive and will be debilitating’, ‘there’s no treatment’, ‘the condition is terminal’. Courage is understanding that while your journey has more than its share of earth-shattering moments, your strength is pivotal in inspiring your loved ones to not lose hope. Courage is finding the strength to keep moving forward, even when a part of you wants to run away.
In the rare disease community, most start off thinking that they are on a customary golden ticket to college, marriage, kids, and an expressway to standardized dreams. Instead, they find themselves navigating a dark, winding road complete with uncertainty and desperation – also known as the rare disease odyssey.
Courage is facing that rare disease odyssey with love, hope, determination, and perseverance. It is important to note that no one is alone in the rare disease community. In fact, rare disease people belong to a vibrant, tight knit, community of rare people across thousands of smaller disease-specific communities who have discovered the true meaning of courage. And from that abundance of courage births collaborative projects and unified efforts with various stakeholders across the biopharma industry to find treatments and potential cures.
Ultimately, when it all comes down to it, we are all products of the choices we make in life. When handed a rare disease odyssey, you can either choose to sit in perpetual sadness, immobilized by the gravity of your rare journey, or you can choose the path of courage – to rise above the pain and treasure the most precious gift you have – life itself. Within the rare disease community, there are several courageous individuals that have chosen the later and our team at Blaze Therapeutics is determined to help support the choice to be courageous.