When you wake up in pain and dislocating and your little brother and sister just want you to feel better. So my sister gives me a massage and my little brother brushes my hair. They are so cute how much they care about me. #SofiasHelpingHand #ehlersdanlossyndrome #MCAS #POTS

Just posted a video instagram.com/p/CNAmi69jtfS/…

When your big toe keeps dislocating and your ankle hurts during hot weather you tape up, put on your ankle brace and rock cute sandals anyway. That is how I roll. #pleaseaskmeaboutmyinvisibleillness #SofiasHelpingHand #ehlersdanlossyndrome #scoliosis #MCAS #POTS #syringomyelia

#pleaseaskmeaboutmyinvisibleillness #SofiasHelpingHand #childcharity #ehlersdanlossyndrome #EDS #zebras #zebrastrong #determination #scoliosis #MCAS #POTS #syringomyelia

Check out Sofia's Helping Hand's team fundraising page - give.marfan.org/team/349046

Zebra pile up!!!! A bunch more zebras going out today for kids with Ehlers Danlos Syndrome:) #pleaseaskmeaboutmyinvisibleillness #SofiasHelpingHand #childcharity #ehlersdanlossyndrome #EDS #zebras #zebrastrong #determination #scoliosis #MCAS #POTS #syringomyelia

Join the Sofia's Helping Hand team in the Marfan Virtual Walk!!!! give.marfan.org/team/349046

Zebra White Writing Ehlers Danlos Syndrome on Bonfire bonfire.com/zebra-white-wr…

Check out Sofia's Helping Hand's team fundraising page - give.marfan.org/team/349046

tiktok.com/@sofiashelping… #SofiasHelpingHand #childcharity #ehlersdanlossyndrome #EDS #zebras #zebrastrong #determination #scoliosis #syringomyelia #POTS #MCAS

vm.tiktok.com/ZMeC7qSy9/

We are approaching $1000 raises for the TheMarfanFoundation ONLY 3 MORE DAYS TO RAISE MONEY OR JOIN OUR TEAM! Help us raise funds for the Marfan Foundation. give.marfan.org/SofiasHelpingH… give.marfan.org/sofia #SofiasHelpingHand #ehlersdanlossyndrome #zebrastrong #determination #marfan

My ferret and I are ready for the TheMarfanFoundation walk on Sunday. We can not wait to participate in person next year. THERE IS STILL TIME LEFT TO DONATE! Help us get answers through research and support. give.marfan.org/sofia #SofiasHelpingHand #mafan #ehlersdanlossyndrome

sofiashelpinghand.com/post/my-ehlers…

See this Instagram photo by @sofiashelpinghand instagram.com/p/CTnVeA_lm6y/…

We are delighted to announce The Ehlers-Danlos Society Center of Excellence program, a first step toward the goal of developing a network of Centers that will assist thousands of people worldwide with multi-disciplinary team care. Read more: ehlers-danlos.com/the-ehlers-dan… #EDS #HSD

We all came together to celebrate Aortic Disease Awareness Week dressed in our orangey best! Check out this video of some of the faces of Aortic Disease Awareness! Didn't make the video? Share your pictures with us in the comments. fb.watch/8cnDyGmnXw/ via facebookwatch

Happy One Year Anniversary!!!!! Please see the video to see all the amazing things that we have been able to accomplish this year! We do not own the rights to the music. #SofiasHelpingHand #ehlersdanlossyndrome #marfanfoundation fb.watch/8BCXjCA_3x/ via facebookwatch

I am Sofia from Sofia's Helping Hand, and I am honored to be The Marfan Foundation 2022 South Florida Teen Ambassador Chair. Please help me support The Marfan Foundation by making a donation through my page. give.marfan.org/fundraiser/360… #EDS #POTS #MCAS #Marfan #MarfanWalkforVictory

My Marfan Foundation Speech at the Marfan Walk for Victory. Joining forces for connective tissue disorders. #SofiasHelpingHand #childcharity #ehlersdanlossyndrome #EDS #determination #scoliosis #syringomyelia #POTS #MCAS #Marfan #MarfanWalkforVictory2022