![]() I wanted something more than just a plain support ribbon and liked that I could incorporate it into a heart to symbolize the love that I have for them.” – Lisa L.Ĥ. “I got this tattoo for two of my daughters who have Usher syndrome. My tattoo is a permanent reminder to myself to always live up to what the Wonder Woman name stands for no matter what Hashimoto’s encephalopathy or life throws at me.” -Maddy B.ģ. ![]() ![]() A year ago, in the spirit of living life to the fullest, I decided to get my first tattoo - a Wonder Woman symbol, on my neck. He has given me an appreciation for life and has taught me to live life in the moment and experience all you can, while you still can. “Over my five-year journey with Hashimoto’s encephalopathy (HE) and having witnessed my most difficult times, my family started calling me ‘Wonder Woman’ for my strength to fight on and overcome obstacles whenever this disease tries to knock me down. The big green leaf in the shape of a heart is for my husband, Lief, and the turquoise bow on the turtle is the awareness color for PACS1.” – Elizabeth B.Ģ. The rose is for my other daughter, her twin Sabrina Rose. Kelly is my ‘turtle,’ slow and steady, and always moving forward. My daughter Kelly has an ultra rare genetic disorder called PACS1 syndrome. Here’s some photos of hope and inspiration:ġ. These tattoos show that rare disease impacts all of us in some way, whether it’s our friend, our sibling, or our child fighting through the impossible each day. This Rare Disease Day, The Mighty and the National Organization for Rare Disorders, a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, asked each of their communities to share photos and the meaning behind their rare disease tattoos. For many adults and families living with rare conditions, these symbols and colors are worn proudly throughout the year – some even tattoo them to serve as a constant reminder of the rare disease journey: struggle, perseverance and hope. To help raise awareness and create visibility, groups often design ribbons or symbols, or select a color to help represent their condition and cause. Some conditions are more visible, others not so much. If you’re part of the rare disease community, you share a space with people who represent over 7,000 rare diseases and counting.
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