Together Our Disease Communities Form an Unstoppable Team

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by Lori DePorter |

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“Snowflakes. One of nature’s most fragile things, but just look at what they do when they stick together.” – Unknown

As I look out my window, it is snowing. Watching the snow fall reminds me of a blog post I wrote a few years ago about how Parkinson’s is called the “snowflake disease.” We are all different and have our unique challenges, but there is also a hidden strength that can be overlooked. Parkinson’s is not classified as a rare disease, but we are each rare within our community due to varied manifestations of the condition.

There is strength in numbers, especially when a group sticks together to support one another. It is no longer just a group of people, it is a team. A team with a purpose. For Rare Disease Day on Feb. 28, I want to urge the Parkinson’s community to raise awareness of rare diseases so we can help others who struggle with medical conditions but don’t get as much awareness and funding as we do.

Our story is the strength of our team

“We are not a team because we work together. We are a team because we trust, respect and care for each other.” – Vala Afshar

There are times when we look fragile, and those around us don’t understand how we keep moving. We keep moving because stopping is not an option.

Just as a snowflake journeys through the air in twists and turns, we go on a journey of our own. We don’t know where we are headed. We get turned around, bump into others, and slow down, but we don’t stop moving. We go where our journey takes us. We have a destination, we just don’t know when we will get there. We gain momentum and size when we stick together. We do great things, and we do them together as a team. 

A bigger team

In July of 2018, my first “Life, Lemons, and Lemonade” column was published. I didn’t know what to expect, but I became part of a team of writers and editors at BioNews, which publishes dozens of websites about diseases, many of them rare. Most of the writers are patients who write informative and personal columns about traveling the path of the unknown. It’s an incredible team that continues to grow with me.

Parkinson’s is not rare, but we should stand with the rare disease communities I’ve grown to know — cystic fibrosis, Cushing’s disease, Friedreich’s ataxia, and others. Be part of the team supporting the rare disease community. Explore the other publications BioNews offers. You may find inspiration from someone with a different perspective who has shared their story. 

So, for Rare Disease Day, the Parkinson’s community should join this perfect storm of intricate, unique, and, most of all, strong snowflakes. Together we are a powerful force of nature. As we blanket the road of our journey, we will persevere until our storm ends. We may go down different paths, but we will reach our ultimate destination: life with awareness and cures. 

We are unique. We are strong. We are warriors. And together we are unstoppable.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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