Tuesday, August 11, 2020

My Blount's Disease Journey: From Diagnosis to Advocacy

                                                                                                      Photo credit: Anneliese

My personal journey began with different medical problems at 18 months old. After I had my first surgery at 4 years old, I started my first of many sessions with physical therapy. Ten surgeries later, at 13 years old, I am still battling Blount's Disease which has not only made me stronger, but has inspired me to share my journey with others and be an advocate for the mental health and rare disease community. Having a rare condition isn't easy. It can create a mix of emotions and can not only change your life, but change the lives of those who are closest to you. The journey with having a rare condition has helped shape my goals, my life, and my future. With the help of my mom, I have taken my experiences and together we established the first nonprofit in the United States for Blount's Disease called the Blounts Disease Strong Foundation.

Blount's disease can be isolating and I have learned mental health awareness is very important. Living with a rare condition can have a huge impact on one's mental health. I have faced my own challenges and for us patients, there is a double stigma with living with a rare disease and facing a mental health illness. I am not ashamed of sharing my story. All the people who have knocked me down in the past through bullying have inspired me to be a better advocate. Sharing my story can help bring the the community together and help someone find their own chapter in life. 

My journey and goals are far from over. I want to inspire people out there in the world. I want others to not be afraid when they hear I have a rare disease. I want people to understand the importance of raising awareness about rare diseases and how it can help with research and connecting other families. I want to be the voice, advocate, and cheerleader for others. I want other Blount's Disease warriors to find their passion and know that just because we have a rare condition, it doesn't make us any less.


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