Here’s what you can do this PNH Awareness Week
There are several ways to get involved and help spread the word
Often when rare disease awareness weeks or months come around each year, people ask, “What can I do?” or “How can I help make a difference?” Now is a good time to answer these questions because Sept. 16-22 is Paroxysmal Nocturnal Hemoglobinuria (PNH) Awareness Week.
Because I have PNH and aplastic anemia, I’ve learned firsthand how to fight these illnesses, and I can draw from my experiences to help others learn about rare blood disorders during this special week. An anecdote from my past might also help to provide encouragement.
One year, a trip to New York City from my home in Alabama for a checkup with my blood disorder specialist happened to coincide with PNH Awareness Week. My doctor mentioned that a PNH walk called March for Marrow was taking place that week, and he encouraged me to participate. I decided that it’d be a great way to get involved.
On the day of the event, I met up with the other participants at a park, where we were given red shirts to wear during the walk. To my surprise, I met many people who understood me and what I was going through. It felt great to chat with caregivers, fellow patients and their families, and members of the medical profession, all standing together for an important cause.
Usually, when I meet these types of folks, it’s in a one-on-one setting. But at this event, it was great to see everyone together, supporting the fight.
How to participate
Getting back to the questions I mentioned at the beginning of the column, I’ve compiled a list of things you can do. These are some of my ideas, so please feel free to share your own in the comments section below.
- Post on social media your thoughts about how and what you’ve learned about PNH. Use the hashtag #PNHAwareness2024.
- Record a video with tips about managing PNH or debunking myths about it.
- Check in with a patient who has been diagnosed with PNH and ask them to tell you about their journey.
- Wear red in support of PNH Awareness Week.
- Share tips you’ve learned with members of your support team.
- Take a day to reflect on how far you’ve come on your own journey.
- Host a fundraising event, such as an awareness walk or run.
- Join a virtual support group.
At the end of the day, it’s not so much about what you are doing, but why you are doing it. That feeling in your heart is what matters most.
Finally, if you didn’t have time to participate this week, don’t worry, there is another opportunity to get involved because Oct. 12 is Global PNH Awareness Day.
Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.
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