2024 Rare Disease Day

Spread the love

Why do we need another awareness day? We need these days to inform people of diseases they may have never heard of. One of my diseases is Sjogren’s Syndrome, which is not a rare disease. It’s amazing that almost everyone that I tell about Sjogren’s has never heard of it. And the rare diseases are even more unknown.

When a rare disease occurs, it’s because there are only 1 in 2,000 people who have been diagnosed with it. 300 Million people in the world have a rare disease. Because I have Ehlers Danlos Syndrome hyper mobility, I’m one of those 300M.

Ehlers Danlos Syndrome is genetic and is very often, misdiagnosed. Most people who start showing symptoms will have to wait years before they get their diagnosis. That happened with me. Doctors are not taught much about rare diseases. They also assume that they won’t have a patient with a rare disease.

I’ve posted about Rare Disease Day for years and really hope to educate people. Health problems that aren’t understood by a doctor should convince them to explore further. If they don’t, a patient could continue to suffer a long time or even forever.

Rare diseases rarely have research money, which prevents patients from receiving treatments. Without medications or other treatments, there is no hope of improvement. I encourage you to browse the list of Rare Diseases and learn a little bit about some disease. If you are interested, most will have a foundation that tries to get donations. These donations help to pay for research.

Thanks for taking the time to learn a bit about rare diseases. Do you have a rare disease?

@2024, copyright Lisa Ehrman

Disclaimer: I’m not a medical expert. This post contains my experiences and opinions, and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.

2 thoughts on “2024 Rare Disease Day”

Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Scroll to Top