According to NASA, the number of exoplanets, or planets beyond our solar system, is in the thousands and rising. Rare diseases are kind of like exoplanets. There are many, but unless you are a medical specialist, scientist, or patient diagnosed with one, you probably are unlikely to know much about them.
To put it in perspective, the National Organization for Rare Disorders (NORD) database currently reports on more than 1,200 diseases. And the webpage for Rare Disease Day 2021, which is on Feb. 28, points out that more than 6,000 rare diseases have been identified around the world. How many of those are you aware of?
I encourage everyone to acknowledge Rare Disease Day this year. Get ready to spread awareness about the rare disease that may afflict you or someone you know. I plan to post facts and resources to social media to help educate others about pulmonary hypertension (PH).
My son’s personal experience with PH, and the rare heart and double-lung transplant it led to, will serve as an eye-opening example of the reality of this disease.
Once again, I also will participate in #WhatMakesMeRare, a campaign by BioNews, the parent company of this website. I hope you will, too!
Other ways to have an impact include talking to members of the media or advocating for rare diseases by seeking support from political figures and local authorities. You could also coordinate with one of the many rare disease organizations to promote an online fundraiser. Some good options for PH-related donations are the Pulmonary Hypertension Association and the Robyn J. Barst Pediatric Research and Mentoring Fund.
Don’t forget to practice what you preach. I can’t emphasize this enough. Rare Disease Day isn’t just about your personal experiences, it’s also about those of the rare disease community at large. By Feb. 28, I challenge you to learn about a disease that’s unfamiliar to you. Reflect on the struggles of those afflicted with that disease. Connect with someone who is rare like you, or someone you know, but in a different battle.
Rather than making comparisons, think about the similarities. Living with a rare disease is hard, and we all need understanding, support, and advocacy for treatments and cures.
Whether you are a PH patient or caregiver, make it your rare disease resolution to join the Pulmonary Hypertension News Forums. Become part of our close-knit family and let’s advocate for PH together. Make yourself at home, but then reach out to our neighbors.
Those at BioNews strive to provide pertinent and updated information about complex rare diseases. The company’s homepage has links to the various diseases that are covered. Each disease website has forums that focus on supporting and educating those afflicted with the disease, as well as their caregivers and loved ones. If you are dealing with coexisting conditions, you are welcome to join any of the forums that pertain to you.
All of the listed rare diseases have a wide selection of columns available for anyone to read. This is a great way to expand your heart and mind. Read about disease facts and medical advancements from medical professionals or gain perspective from personal experiences shared by columnists who are patients and caregivers.
Don’t forget to rate the column and leave a comment. If something struck a chord, share your reaction with the columnist and with other readers. If you have a question, ask it. This is how we all learn and grow, and it is what rare disease advocacy is all about.
If you post to social media, inform others living with a rare disease that BioNews, NORD, and the Rare Disease Day webpages are all excellent resources for awareness, advocacy, and emotional support.
I believe in Mother Teresa’s compassionate words of wisdom: “I can do things you cannot, you can do things I cannot; together we can do great things.”
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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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