21 Tattoos That Give Us Hope for Rare Disease

If you’re part of the rare disease community, you share a space with people who represent over 7,000 rare diseases and counting. Some conditions are more visible, others not so much. To help raise awareness and create visibility, groups often design ribbons or symbols, or select a color to help represent their condition and cause. 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.

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. 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.

Here’s some photos of hope and inspiration:

1. “I designed this tattoo for my family. My daughter Kelly has an ultra rare genetic disorder called PACS1 syndrome. Kelly is my ‘turtle,’ slow and steady, and always moving forward. The rose is for my other daughter, her twin Sabrina Rose. 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.

2. “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. 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. 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. 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.

3. “I got this tattoo for two of my daughters who have Usher syndrome. 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.

4. “My wife just underwent a bone marrow transplant (BMT) and these are two stem cells from under a microscope. The letters represent ‘a love for eternity’ and honor my wife’s battle against aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH).” – David H.

5. “This is my husband and our middle son Zephyr. He was diagnosed with food protein induced enterocolitis syndrome (FPIEs) and required a feeding tube for the first six years of his life. Zephyr is now 8 and he is two years in the clear now. His button was a huge part of our lives. There was lots of learning; we even started a support group for kids and parents with feeding tubes in Australia.” – Kate A.

6. “My 14-month old son, Bryce, passed away from Krabbe disease. Bryce was the face behind Senate Bill 41 in Indiana that will require all Hoosier babies to be tested for Krabbe, Pompei disease and Hurlers syndrome. We helped to raise more than $70,000 for many charitable organizations.” – Joel C.

7. “I have two tattoos related to my Ehlers-Danlos syndrome: the phoenix for the rebirth after my diagnosis, and the armored hand embracing a lady’s hand. That symbolizes the support I have from my future husband. Together we’re stronger and can face anything.” – Manon S.

8. “My son has maple syrup urine disease and cystic fibrosis. He’s the only one in the world living with both diseases, so I had to get a zebra! The rest of the tattoo symbolizes our family.” – Ash B.

9. “I have two tattoos for my rare diseases, pars planitis and retinal vasculitis. They help me remember to always keep fighting and remind me that I am a fighter, even on days when I don’t feel like it.” – Jennifer R.

10. “I have cystic fibrosis. This is my favorite tattoo that I have that symbolizes my rare disease.” – Sew C.

11. “I have Noonan syndrome and all my life I’ve been made fun of for being short and ‘different.’ It used to bother me a lot, but as I grew older, it didn’t as much. I got a tattoo of my ribbon to remind me that I am unique and I am strong. Happy Noonan Syndrome Awareness Month from your PTPN11 friend.”  – Mykey B.

12. “I got this as a reminder that no matter how my disease, fibrous dysplasia, changes my appearance, I am still beautiful. ‘Eres bella’ means you’re beautiful.” – Brittany A.

13. “This is a piece that encompasses many of my medical issues. The spoons are for the spoon theory, the marionette represents how my illness makes me feel trapped, and the colors in the skirts are the awareness ribbon colors of some of my conditions. The tattoo artist is Michael Perry.” – Sarah B.

14. “This is the Hebrew phrase for ‘not alone.’ Even though all my conditions are rare, I know I’m not alone in my fight for treatment, research and a cure.” – Amanda D.

15. “My tattoo has the Roman numerals for 15 with the word ‘hope,’ representing the 15th chromosome for Angelman syndrome. There can always be hope for possible ‘cures’ for seizures or communication. This is honor of my son, Cole.” – Jim K.

16. “My daughter has GRIN2B related neurodevelopment disorder. Natalie is represented by the queen bee in the middle since a bee is the mascot of GRIN2B. The flowers around her represent all the beauty and love that surrounds our girl.” – Brittaney C.

17. “This is a piece for my daughter who is diagnosed with a rare genetic mutation of the KIF1A gene. It’s a metal genome coming out of my skin with her name engraved to represent her strength. The denim rare disease ribbon is wrapped around the broken part of the gene to represent the break in the KIF1A gene that carries protein.” – Jordan B.

18. “My son and I are Von-Hippel Lindau (VHL) warriors. The semicolon represents that this diagnosis is not the end. Our story is not over.” – Katie C.

19. “My daughter Valerie Rose passed from alveolar capillary dysplasia (ACD) at 41 days old. It’s a rare lung disease with a nearly 100 percent mortality rate. The only cure currently is a bilateral lung transplant. The emblem at the end of her heartbeat is the ACD emblem.” – Lisa L.

20. “I have idiopathic subglottic stenosis. Scar tissue forms in your trachea and makes your airway narrow. It makes breathing very difficult. Imagine breathing through a coffee stir stick. Just taking a shower or walking to the bathroom is exhausting.” – Becky M.

21. “My rare disease is genetic and is represented here with a ‘broken’ rung on the DNA ladder. My tattoo artist promises to fix it just as soon as medicine can ‘fix’ my DNA.” – Jen J.

Do you have a tattoo that symbolizes your rare disease, or your child’s rare disease? Let us know in the comments below.