Updated: Nov 23, 2019
It starts off with a feeling that something’s just not right. Whether that feeling comes from the person with a condition or the parent who is raising a child struggling with a condition, the unrelenting stress of suspecting something is wrong, then looking for answers, only to learn that you belong to the World of Rare, is a journey you have to personally experience in order to understand.
The World of Rare is not only poorly understood by the general public, but also by the scientific and medical community. This has led to a rise in RareLeaders within the rare disease advocacy space taking matters into their own hands. A RareLeaders is a person, living with or caring for someone with a rare condition, who has taken a leadership role within a rare disease community. Because most from the World of Rare become great multitaskers, managing symptoms, appointments, relationships, therapies, emotions, fears, etc., those who choose to become RareLeaders are well trained to help others new to the World of Rare or not necessarily new but struggling to find their place.
The World of Rare involves the continuous balancing of family life with work life and/or school life with the added complications of medical appointments and hospitalizations, which often come with disappointing results. Not to mention the added financial strain of juggling necessary medical equipment, procedures, appointments, medications, and specialized products needed specifically to help improve quality of life and/or morale.
If you are a member of the World of Rare, you understand sleep deprivation. You either choose fattening foods in order to keep up energy levels and gain weight or you miss meals and lose weight. Fighting back tears becomes a work of art that some master while others learn to accept their triggers, carrying tissues with them at all times to catch the waterworks should a memory or a suppressed fear come to surface.
In the World of Rare, life is understood to be precious…to be fleeting. Life is short and a gift to be treasured. As a member of the rare disease community, it becomes a quick realization at how beautiful life truly is. RareLeaders, along with the communities they serve, fight for life every day, through research, advocacy, and legislation. However, the same way life can be so beautiful, it can also be unnecessarily cruel and difficult.
Being a member of the rare disease community is like being forced to metaphorically carry cement blocks for miles to an undisclosed location, not knowing when you will be allowed to take a break, grab a sip of water or when you will make it to your final destination. This journey, for those who survive, makes the person undoubtedly stronger. While this strength may not show physically, the journey forces the development of the internal strength needed in order to take the next steps.
Some rare diseases result in a loss of function, while others result in an inability to develop function. It can be understandably frustrating when others have expectations that rare disease makes impossible.
When someone says, “I don’t know how you do it,” we think, “Neither do I!”
When someone else says, “ I couldn’t do what you do,” we think, “You probably could, if you had to…”
When someone says, “You are such an inspiration", we think “I am just trying to make the best of my situation.”
There are those of us who really find it hard to cope in the World of Rare. Some parents choose to give up their rare disease children, while others with rare diseases choose to end their lives by their own hands. Those of us who choose to stick with rare life do so, taking each day as it comes; accepting the unpredictability, the pain, the exhaustion, the financial demands, and at times the isolation.
While the World of Rare is difficult and trying, we aren’t alone. We are a tight knit community of mothers, fathers, sons, daughters, grandparents, cousins, etc. full of love and understanding for each other’s journeys. In short, we are a family; and we are in this together. Although it may be difficult for those outside of the World of Rare to understand our journeys, we welcome and encourage everyone to join us in our efforts to raise awareness and fund research that will guide us to discover treatments and potential cures. We can’t succeed on our own. The rare disease community is strong, but united with the rest of the world, we are stronger and closer to saving the lives of our children and future generations of rare people.