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Where there is life, there is hope...

Living with a Connective Tissue Disorder can be challenging but we have hope for a better tomorrow. Here are some stories of hope from those affected by connective tissue disorders to inspire you!

Amanda's Story

I was diagnosed with a connective tissue disorder and Chiari malformation, after a traumatic brain injury over a decade ago. I didn't understand how a simple accident could end my career and turn my life upside-down. Every day, I battled chronic pain, fatigue, and other symptoms that made even the simplest tasks feel impossible. But despite all of this, I refused to let my condition define me. Instead, I focused on finding something bigger than myself to channel my energy and passion into. I started support groups for others living with similar issues and eventually founded a national organization dedicated to advocating for awareness and resources for those living with Dysautonomia and related conditions. I also served on committees and advisory boards for other organizations. 

Through my advocacy work, I discovered a sense of purpose and fulfillment that I never thought was possible. By helping others, I was able to find greater meaning in my own life and find hope in the face of my own struggles.

Living with a connective tissue disorder is still a challenge, but through my experiences, I've learned that it's possible to find the light even in the darkest of times. By focusing on something bigger than ourselves, we can discover a sense of purpose and meaning that can help us overcome even the greatest obstacles. So to anyone out there living with a connective tissue disorder, I urge you to find your own passion and channel your energy into something positive. Whether it's starting a support group, advocating for awareness, volunteering, or simply reaching out to others who are going through similar struggles, there's always a way to make a difference and find hope in the face of adversity.

Submit your story of hope

If you are living with a connective tissue disorder and would like to share a short Story of Hope for our website please email with your story. Please keep submissions under 400 words. 

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