Rare Disease Awareness Month!! 🦓🎗️
I am NOT too rare to care 🦓🎗️
It's Rare Disease Awareness Month!
"One out of every 10 Americans is living with a rare disease. Worldwide, there are more than 300 million people with rare diseases." (1)
Now, more than ever, we need to spread awareness for these rare diseases and conditions. With the defunding and stop of all NIH disease and cancer research (on top of everything else going on), we can not stop talking about and spreading awareness for rare diseases and conditions.
Educate yourself on rare diseases and conditions. Know someone with a rare disease? Ask them about their journey (with consent, do not pressure them).
I am diagnosed with and suspected of (via my team) numerous rare diseases/conditions (some more rare than others) and am on a continuous fight for answers. Many of these are invisible illnesses. I've had people say to me "other than the wheelchair, you're perfectly healthy," while I'm juggling hundreds of symptoms that are invisible on the outside. Not all illnesses and/or disabilities are visible. Not all rare diseases are visible.
WE ARE NOT TOO RARE TO CARE 🦓🎗️
source- https://rarediseases.org/rare-disease-day/
#rare #disease #rarediseaseawareness #chronicillness #disability
Building on the powerful message that we are 'not too rare to care,' it's incredibly important to shine a light on the vast world of rare diseases and their often-invisible nature. Many of these conditions, including a significant number of autoimmune diseases, demand our attention and understanding, especially during dedicated awareness months. When we talk about 'autoimmune disease awareness month,' we're highlighting a complex group of conditions where the body's immune system mistakenly attacks its own healthy tissues. While some autoimmune diseases are more common, many are considered rare, or they manifest with rare complications, placing them squarely under the umbrella of rare diseases. This overlap means that advocacy for one often benefits the other, as both groups face similar challenges: delayed diagnosis, limited treatment options, and a profound lack of public understanding. My personal experience, much like what you might see in awareness campaigns featuring someone in a neck brace or wheelchair, underscores how even visible aids don't always convey the full scope of an invisible illness. The constant fatigue, chronic pain, neurological symptoms, or internal organ damage are battles fought daily, often unseen by the outside world. This can lead to dismissive comments or a feeling of isolation, making the 'we are not too rare to care' message even more crucial. Take Myositis Awareness Month, for example. Myositis is a rare autoimmune disease that causes chronic muscle inflammation and weakness. Without specific awareness campaigns, conditions like this might remain largely unknown even within the medical community, let alone among the general public. Each specific awareness month plays a vital role in pushing for research, better diagnostics, and improved patient care for these often-debilitating conditions. Symbols like the zebra, the official mascot for rare diseases, and colors like the purple often associated with general awareness, help bridge this gap. They foster a sense of community and give a visual identity to conditions that are otherwise hidden. They represent the unique stripe of each individual and the collective strength of those fighting for answers and recognition. By embracing these symbols and sharing our stories, we can transform isolation into solidarity. So, what can you do? Beyond just being aware that these months exist, you can actively seek out reliable information, share posts from patient advocates, and support organizations dedicated to rare and autoimmune disease research. Every conversation, every shared statistic (like the 1 in 10 Americans living with a rare disease), and every act of empathy contributes to a world where those with rare and invisible illnesses feel seen, heard, and cared for. Let's make sure that true care extends far beyond just one month.