February 29th may only come every 4 years, but living with a rare disease doesn’t skip any time. Rare diseases come in many forms; some visible, some invisible, but all need more awareness. Living with a rare disease can not only be isolating, frustrating and scary, but it can be life threatening, expensive and just plain unknown.
More often than not, people across the world living with a rare disease experience social isolation due to both physical and emotional access issues to such things as education, housing, healthcare, socialization and employment. By bringing more awareness to the over 6,000 rare diseases that have been identified, we are sharing our stories, our struggles, and our lives so that others can better understand the immense difficulties we face on a daily basis.
At Fight Like A Warrior, we understand what it’s like to live with rare diseases. And we hope to share our voices so that others can better understand and changes can be made. Here are some quotes from our team:
“I was a child when I got sick. I was lost, I was scared, and I was silenced. But sometimes getting lost is how you find your power." -Sara C., Cards for Warriors Director
“Living with a rare disease is hard because it doesn’t come with the same awareness. When you tell someone you have cancer, everyone tells you how sorry they are and how they are there to help no matter what. If you say you have CRPS or Trigeminal Neuralgia and try to explain the pain as you stand there in front of them…they sort of crinkle their brows and say, ‘Well, I hope you feel better!’
Our treatments aren’t few and far between because if people aren’t aware of our illness, no one puts funding into finding a cure.
So, when I talk about it or post about it or cry about it, it’s because if you KNOW about my disease there’s a better chance of the next generation never speaking a work about it because there’s already a cure.” -Jaelin P., Advocacy Team Director
“There isn’t a cure for my disease. And most of the time you can’t see it. But I learned to stop hiding my disease, my struggles, my pain, and use my voice to bring awareness for not only myself but all the others living with rare diseases that just aren’t understood.” -Shannan O., Blog Manager
You may have a rare disease, but you are not alone. Reach out to us at Fight Like A Warrior and share your story and connect with others. We are in this together.
For more information on Rare Disease Day 2020, check out https://www.rarediseaseday.org/
Also, Fight Like A Warrior will be posting all day to bring awareness to Rare Diseases.
And for more from me, you can follow me on Instagram: @ShannieOHL