Blount's Disease

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My Blounts Disease Journey: From Diagnosis to Advocacy

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 BlountsDisease which has not only made me stronger, but has inspired me to share my journey with others and be an advocate for the MentalHealth and RareDisease 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 BlountsDisease called the BlountsDisease Strong Foundation.

BlountsDisease can be isolating and I have learned MentalHealth awareness is very important. Living with a rare condition can have a huge impact on one’s MentalHealth. I have faced my own challenges and for us patients, there is a double stigma with living with a RareDisease and facing a MentalHealth 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 RareDisease. I want people to understand the importance of raising awareness about RareDisease 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 BlountsDisease warriors to find their passion and know that just because we have a rare condition, it doesn’t make us any less. #BlountsDisease #RareDisease #ChronicIllness #MentalHealth


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Hello....I am Strong

Challenges make us stronger. There is no challenge we can’t face. Being in the rare community allows those challenges to push us harder to advocate, they push us to be brave, and most of all generate hope in us. Having a rare condition may affect you mentally, emotionally, and physically…but you my friend are strong. Your story inspires hope in others, and can give others hope to accept their own story. Don’t be afraid to share it with the world.

Even though it may not feel like it sometimes, even though you may feel frustrated with your condition, and you don’t have the exact answers you need, you are strong enough to face your struggles. You have been through a lot and it is not an easy journey, but I am so proud of you. If you fall three times, stand up  four. Never forget everything you have been through and how far you have come. The hardest prison to escape from is the mind. It’s ok not to be ok. Your illness does not define you. Don’t waste time feeling sorry for yourself. Be thankful for your struggle because without it, you wouldn’t have stumbled across your strength. The world is in our hands to advocate and make a difference.

You were born to make an rise up, stand in front of the mirror, and repeat after me… “Hello…. I am Strong!”

-Angela, President of BlountsDisease Strong Foundation

#RareDisease #BlountsDisease