Rare Disease Day is an opportunity to join forces and raise awareness
Together, members of the rare disease community are a powerful voice
Growing up, I always associated the month of February with Valentine’s Day, a holiday filled with hearts and flowers. But now that I live with ALS, the holiday is nowhere near as important to me as Rare Disease Day on Feb. 28.
ALS is among the many serious conditions in the rare disease community, and although our diseases differ in terms of symptoms and treatments, when we come together, we are a powerful voice demanding global awareness.
Along with living with a serious health condition, we in the rare disease community also have in common the need to accept our diagnoses, adjust to our new normal, and maintain a positive attitude despite our individual health challenges.
Am I rare?
Having lived with ALS for 13 years, I used to be considered rare, but I’m not so rare anymore. Why?
At the time of my diagnosis in 2010, the typical progression of ALS symptoms was predicted to happen pretty fast. Within two to five years from diagnosis, patients experienced weak arms and legs, followed by trouble swallowing, and finally, their breathing became restricted to the point of causing their death.
But now more ALS patients are living longer — in fact, up to 10% can live 10 years or longer. I believe this is due to several reasons. We’ve seen advances in treatment and a focus on improving patients’ quality of life, and the internet has enabled patients to communicate and learn from one another.
The growth of ALS clinics, support groups, online forums, and social media helped to speed along discussions about a variety of quality-of-life topics, including everything from mobility scooters to improving sleep, home modifications, and more.
I’ll admit that when I reached the five-year milestone of living with ALS and could still walk with a rollator and had no trouble breathing, I knew I was rare. But then I began to meet other patients online who, like me, were living longer. We shared the mindset of a positive attitude and following healthy lifestyles. That spurred me to start my ALS and Wellness Blog and begin writing this column for ALS News Today.
By the time I hit my 10-year milestone, again I felt rare. But I also felt proud to have established a positive presence in the ALS community.
Can we work together?
In a previous column, I shared my jealousy at the media attention other diseases have received and felt we were competing against one another for limited funding and support. I’ve since come to recognize that as a larger community of rare diseases, we are a powerful voice.
During the month of February, BioNews, the parent company of this website, is highlighting rare disease awareness. To learn more, just type the hashtag #WhyRare on LinkedIn, Facebook, and Instagram.
And remember, no matter what our rare disease is, together we can help each other learn to live well.
Note: ALS 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 other 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 ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.
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