What’s it like to be one of the 350 million people worldwide who are living with (or caregiving for) one of the more than 6,000 rare diseases? The answers would be as unique as people themselves, but would likely include mention of learning to navigate healthcare and to creatively juggle broad impact across many areas of their lives. Rare Disease Day, held on the last day of February each year, brings an opportunity to raise awareness and to offer insights into the patient experience. While the true meaning of Zen isn’t mindfulness or habits that create a sense of peace, we’ll use that popular concept to frame a 4-step approach for newly diagnosed patients and those who lives are affected by rare disease.
You Are Here. Take stock of where you are. Consider where you wish to be. Think about what changes are possible, and realize which ones are not. What frameworks and guideposts exist?
What really matters? Know what’s necessary. Cut back or discard what no longer holds sway. Let go. Prioritize.
Take stock, then know your limitations. Understand circumstances around you, heed when they change. Consider limitations and circumstances to proactively create action plans that move you toward dreams and goals. Adjust accordingly when new realities intervene.
There is no ‘charmed life’. Instead, recognize that life is full of ‘charmed moments’. Find them, create them. Enjoy times of peace, accomplishments and wellness. Savor the recall of charmed moments, and draw strength from them.
Some may feel the Zen of living with a rare disease includes self-knowledge and tracking research advancements. Others may mention circles of support, need for more research, stress factors, economic issues, or advocacy efforts. People may point out that the best place to find a helping hand is at the end of one’s own arm. People living with a rare disease can’t always overcome barriers nor can we always claim to be strong – but we can thoughtfully approach each new day and choose to be resilient.
About the Author: Linda Burke is the mother of two boys diagnosed with atypical HUS, a rare disease affecting an estimated 2 people per million. Illness struck her oldest son at age 10 months, and who died from aHUS at the age of 5 years old. Ten months later her younger son became ill, but was the 3rd aHUS patient in the world to receive a ‘compassionate use waiver’ and successfully use a new therapeutic drug for that disease. Linda Burke lives in the US with her husband and teenage son, and volunteers for multiple international aHUS projects with the aHUS Alliance.