My Passion and Hope Make Me Rare

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by Jen Cueva |

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Rare Disease Day

This month, BioNews Services, the parent company of Pulmonary Hypertension News, is focusing on promoting Rare Disease Day with increased advocacy efforts. Several activities are planned worldwide, and I challenge you to locate an event near you.

Rare Disease Day is the last day of February, and this year it falls on the 29th. If you are a patient, caregiver, or friend of someone with a rare disease, this is your time to shine. Share your stories with the world. Social media offers a simple and effective way to spread awareness. Recruit family members and friends to share. It only takes a few minutes. I’m already enjoying the videos and stories from others.

Why is it important? Because one in 20 people has a rare disease, and education and awareness are key. When I was diagnosed in 2005, I didn’t know anyone with pulmonary hypertension (PH). Social media has changed that, and today I talk often with people with PH and other rare diseases.

What makes me rare? It’s not my name — thanks, Moma. Living with pulmonary hypertension, which is considered rare and life-threatening, makes me rare. I am a medical zebra because PH is difficult to diagnosis and its symptoms are often attributed to other illnesses. My strength, determination, and PHight make me rare. I won’t lie, some days suck. But life can be managed with PH.

I love hard and show kindness. That makes me rare. A huge part of what makes me rare is that I recently celebrated my 15-year anniversary with PH. When I was diagnosed, I was told that I had three to five years to live. I owe much gratitude to my medical team, family, researchers, and all of those who continue to support me along this journey.

I believe my passion and my hope make me rare. I will continue to PHight and advocate for those who cannot speak up for themselves. For those of you who can, I encourage you to let your voices be heard.

We may be rare, but together we are stronger.

How does PH make you rare? Please share your thoughts in the comments below.

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Note: Pulmonary Hypertension News 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 Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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