PHOENIX — Dani Medina thought she was dying. A rare genetic disorder and a severe case of COVID-19 left her rapidly declining. Her response was to pack her bags: “I’m just gonna travel and then die.”

She started to post more on her social media about her illness, creating a bucket list of places she wanted to go, seeking answers from a bigger community and documenting the journey along the way.

Medina, 26, is Pascua Yaqui and was born and raised in the Maryvale area of Phoenix. She is witty and flashes her bright, inviting smile as she laughs between her sentences. Her left nostril is pierced, and her dark curly hair waves down to the middle of her back.

At 8, she started playing basketball, but any minor collision would cause “major immediate bruising or bleeding,” so she was often benched. No one thought to ask why.

“I was born with this, and nobody really caught it because it’s rare,” Medina said.

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A post shared by Dani ✨ (@the.dani.adventure)

The thing no one caught is a connective tissue disorder called Vascular Ehlers-Danlos Syndrome, or VEDS. An estimated 6,000 to 8,000 people in the U.S. have VEDS, with a life expectancy average of about 48 years.

VEDS is a genetic disorder that can be inherited from a parent or result from a new mutation. The disorder affects both men and women. While symptoms are not always present in childhood, they eventually worsen and cause life-threatening complications.

“Maryvale isn’t the greatest area, and my primary doctor was based in Maryvale,” she said. “I didn’t have the resources, nor did I have the doctors who were very knowledgeable about what could be going on with me.”

On the road she went, determined to celebrate her favorite holiday, Christmas, by attending a light display in Denver despite her physical condition. That’s when her first video blew up on TikTok, gaining millions of views and attention from celebrities overnight.

“I woke up the next day, and then I had amassed like half a million followers,” Medina said. “I was like, whoa. But I’ve transitioned more to Instagram now, it has a large disability community on there, and it’s a lot more disabled friendly, I would say, with the captions and accessibility to videos and whatnot.”

@daniellescats Forever grateful for these opportunities! @Anthropologie and their crew were such an amazing experience! #ThatAnthroMagic #AnthroPartner #disabilityawareness #accessibility #disabledmodel #heartwarrior #vascularehlersdanlos ♬ original sound – the dani adventure ♿️

This community helped her understand VEDS better by sharing their advice, treatments, experiences and diagnoses. Now, Medina is close friends with the then-stranger who helped guide her to answers.

Medina says with VEDS, she has to be cautious. Her wife, Taylor Medina, and family help her adapt. That could mean driving to the top of the mountain instead of hiking it, no longer being able to wear jeans because they are restrictive and rough on her joints, taking quiet night trips to the grocery store, avoiding traffic or implementing adaptive tools to make her life easier.

Her account on Instagram is a mix of educational content about her health journey; modeling career with Zebedee Talent, an inclusive modeling agency; and her day-to-day life. Medina is also an activist for Indigenous visibility, women’s and LGBTQIA+ rights, and the disability community.

Sprinkled throughout her page are advice videos about attending events, restaurants, traveling with a disability, and how to be mindful. She wants to normalize life with a chronic illness, focusing on daily experiences.

After following other creators with disabilities and seeing that their style of content creation was more about daily existence, she shifted her focus, realizing that “they don’t have to be inspirational for people to care about them.” She also uses closed captions and includes captions for people with both visual and auditory disabilities, so her audience can fully engage.

Medina is open about her past drug use. She said as a teen, she was addicted to opioids and methamphetamine. In a post from 2021, she discussed the difficult relationship between being a recovered addict and now having to heavily rely on opioids to make her as comfortable as she can be.

“They wouldn’t prescribe harsh opioids if they didn’t think I absolutely needed them,” Medina wrote in one of her posts. “I no longer have shame in needing all of these to live comfortably. Of course it’s conflicting but I am still alive and that’s all I can ask for at this point.”

Medina said she is deeply considerate of the burden that death can pose, so she plans carefully for when the time comes: “Money that is accrued on there (Instagram and TikTok), I put into an account that’s for my funeral.”

About one-quarter of noninstitutionalized working-age adults with disabilities lived below the poverty line in 2023, more than twice the rate of adults without disabilities.

“I’m very fortunate because a lot of disabled people are in poverty, unfortunately,” Medina said. “I think had I not gone after modeling, I definitely would not have an income, and then I probably would qualify for disability (Social Security Disability Insurance).”

Changing social and cultural awareness has led to an increase in onscreen representation of people with disabilities over the past century. However, out of 27 actors who won awards for playing a character with disabilities, only two have been disabled actors: Marlee Matlin and Harold Russell.

While there is more representation, Medina and many others feel the best way to facilitate accurate, authentic portrayals of the disability community is to prioritize those who are living that experience. This means asking questions beyond their diagnoses.

“I feel like their experiences, more than their diagnosis, matter,” Medina said.

May is Awareness Month for Vascular Ehlers-Danlos Syndrome, dedicated to outreach and education.

For more stories from Cronkite News, visit cronkitenews.azpbs.org.

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Note: This story originally appeared on Cronkite News. It is published via a Creative Commons license. Cronkite News is produced by the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.

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