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Dignity Health

When Annie Segarra goes about her daily life, it's not immediately obvious she's in pain 24/7.

Since she's so used to living with discomfort, she's able to walk around for a few minutes, but any longer than that, and she has to sit down and rest. However, the fact that she's not always in a wheelchair makes many passersby question wether or not she really has a disability and often results in judging looks and harsh words.

"They can't see that you're in pain because you look 'just fine,'" Segarra explains.


All photos via Annie Segarra, used with permission.

Segarra has Ehlers-Danlos syndrome (EDS), which is a rare connective tissue disorder that affects collagen in the body and causes joints to stretch farther than normal. While that may sound like some sort of superpower, it's anything but, and it's also just the tip of the iceberg in terms of the symptoms that people who have it experience.

Since collagen runs through the entire body, EDS acts as an umbrella for a seemingly endless list of disorders, including poor vision, chronic fatigue, and joint pain. It's also likely connected to postural orthostatic tachycardia syndrome (POTS), which causes a person's blood pressure to drop and heart rate to spike upon standing.

Segarra lives with all these symptoms and many others, but more often than not, they are invisible to the outside eye.

The discomfort and anxiety that accompanies this is enough of a strain, but when you tack on doctors and everyone else not believing you're in pain, everything's amplified.

"It feels like being at the bottom of a well shouting up and there's nobody there," Segarra says.

Annie with her cane dealing with a pain spike at the grocery store.

What's worse, a large part of why she went undiagnosed for so long was because doctors continued to downplay and dismiss her symptoms and self-diagnoses.

Segarra actually started having symptoms as early as infancy, but she didn't realize they might be connected until she reached her early 20s.

She was working two jobs and taking care of her sister who has autism when she started experiencing severe pain in her feet while standing. One of her jobs at the time was as hostess at a restaurant, so she was confronted with that pain quite often, but she thought it might just be an intolerance to wearing heels.

When it got to the point where she could barely stand at all, she went to a see a podiatrist. He took an X-ray of her feet while she was standing, and it looked like she had flat feet. He assumed that was the root of her pain, so he prescribed orthotics. (Later Segarra would learn that people with EDS often appear to have flat feet because of how their hyperactive joints react to weight.)

After orthotics did nothing to help, the doctor suggested creating arches in her feet surgically. Not knowing what else to do, Segarra agreed.

The surgery left her in an unimaginable amount of distress and unable to walk for close to a year. But it also ultimately led to her diagnosis.

Annie in the hospital.

Segarra learned she was strangely immune to anesthesia — another EDS-related symptom. After six months in a wheelchair caused extreme back pain, she got an MRI that showed something unusual: She appeared to have dislocated joints all over her body.

By that time, she'd been documenting her journey with chronic pain via a video blog for about two years and was regularly communicating with other chronically ill and disabled people online. When she described her symptoms, EDS had kept coming up. However, every doctor she mentioned it to dismissed it until the moment she broke down in front of her spine specialist.

At that point, she had been managing escalating symptoms on her own for over a decade, and every time she tried to get answers from a doctor, they either had no advice or mocked her for self-diagnosing such a rare disorder. She was scared and exhausted and had finally had enough.

Thankfully, a doctor (who happened to be a woman) came in at that moment and really listened to what Segarra had to say. The doctor admitted to not knowing about EDS, but after looking it up on her phone, she turned to the primary specialist and said, "She could have this."

That was the tipping point. From there, Segarra was referred to a geneticist who recommended a chromosome blood test to find the genetic variant for EDS. Six months later, she had an official diagnosis.

After all that, Segarra still calls herself lucky because her diagnosis only took three years to get. Many people with similar "invisible" disorders aren't so fortunate.

The experience set her on a mission to change the misconceptions surrounding disabilities and educate others about the many ways one can be impaired.

Ever since middle school, Segarra's been an activist for one cause or another. As a queer Latinx woman, she always had a lot to fight for, but after experiencing years of blatant disregard for her disability, this fight reinvigorated the rest.

"Becoming disabled made me look at my activism real hard," Segarra says.

She uses her skills as a performer and storyteller to give a face and voice to her illness. On her YouTube channel, she confronts the prejudice people with less visible disabilities face on a daily basis.

Segarra has firsthand experience being called a faker simply because people don't realize that some disabilities don't require people to use an assisting device like a wheelchair all the time.

A note someone left on the car of a person with an invisible disability.

She also explores how having a disability affects things like body positivity and being in the LGBTQ community.

Unsurprisingly, Segarra's passion and strength is affecting a growing number of followers, but she knows there's still much more work to be done.

Right now, there's hardly any representation of people like her in media, which makes it easy for the world to remain ignorant about them. For example, Segarra had a heck of a time finding a character to be for Halloween because people with disabilities barely exist in pop culture.

But her activism is slowly but surely changing peoples' perceptions. She says she gets lots of comments like, "Thank you for saying this because I was one of those assholes who thought like this."

She's also helping people who are still searching for a diagnosis realize they're not alone on their journey.

Segarra hopes that one day, no one will be discounted for having a less visible disability. However, for that to happen, we have to learn to quell their snap judgements, and that starts with admitting we don't know what all disabilities look like.

Learn more about how to spot disabilities (spoiler alert, you can't) here:

Images courtesy of Letters of Love
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When Grace Berbig was 7 years old, her mom was diagnosed with leukemia, a cancer of the body’s blood-forming tissues. Being so young, Grace didn’t know what cancer was or why her mother was suddenly living in the hospital. But she did know this: that while her mom was in the hospital, she would always be assured that her family was thinking of her, supporting her and loving her every step of her journey.

Nearly every day, Grace and her two younger sisters would hand-make cards and fill them with drawings and messages of love, which their mother would hang all over the walls of her hospital room. These cherished letters brought immeasurable peace and joy to their mom during her sickness. Sadly, when Grace was just 10 years old, her mother lost her battle with cancer.“

Image courtesy of Letters of Love

Losing my mom put the world in a completely different perspective for me,” Grace says. “I realized that you never know when someone could leave you, so you have to love the people you love with your whole heart, every day.”

Grace’s father was instrumental in helping in the healing process of his daughters. “I distinctly remember my dad constantly reminding my two little sisters, Bella and Sophie, and I that happiness is a choice, and it was now our job to turn this heartbreaking event in our life into something positive.”

When she got to high school, Grace became involved in the Leukemia & Lymphoma Society and a handful of other organizations. But she never felt like she was doing enough.

“I wanted to create an opportunity for people to help beyond donating money, and one that anyone could be a part of, no matter their financial status.”

In October 2018, Grace started Letters of Love, a club at her high school in Long Lake, Minnesota, to emotionally support children battling cancer and other serious illnesses through letter-writing and craft-making.


Image courtesy of Letters of Love

Much to her surprise, more than 100 students showed up for the first club meeting. From then on, Letters of Love grew so fast that during her senior year in high school, Grace had to start a GoFundMe to help cover the cost of card-making materials.

Speaking about her nonprofit today, Grace says, “I can’t find enough words to explain how blessed I feel to have this organization. Beyond the amount of kids and families we are able to support, it allows me to feel so much closer and more connected to my mom.”

Since its inception, Letters of Love has grown to more than 25 clubs with more than 1,000 members providing emotional support to more than 60,000 patients in children’s hospitals around the world. And in the process it has become a full-time job for Grace.

“I do everything from training volunteers and club ambassadors, paying bills, designing merchandise, preparing financial predictions and overviews, applying for grants, to going through each and every card ensuring they are appropriate to send out to hospitals.”

Image courtesy of Letters of Love

In addition to running Letters of Love, Grace and her small team must also contend with the emotions inherent in their line of work.

“There have been many, many tears cried,” she says. “Working to support children who are battling cancer and other serious and sometimes chronic illnesses can absolutely be extremely difficult mentally. I feel so blessed to be an organization that focuses solely on bringing joy to these children, though. We do everything we can to simply put a smile on their face, and ensure they know that they are so loved, so strong, and so supported by people all around the world.”

Image courtesy of Letters of Love

Letters of Love has been particularly instrumental in offering emotional support to children who have been unable to see friends and family due to COVID-19. A video campaign in the summer of 2021 even saw members of the NFL’s Minnesota Vikings and the NHL’s Minnesota Wild offer short videos of hope and encouragement to affected children.

Grace is currently taking a gap year before she starts college so she can focus on growing Letters of Love as well as to work on various related projects, including the publication of a children’s book.

“The goal of the book is to teach children the immense impact that small acts of kindness can have, how to treat their peers who may be diagnosed with disabilities or illness, and how they are never too young to change the world,” she says.

Since she was 10, Grace has kept memories of her mother close to her, as a source of love and inspiration in her life and in the work she does with Letters of Love.

Image courtesy of Grace Berbig

“When I lost my mom, I felt like a section of my heart went with her, so ever since, I have been filling that piece with love and compassion towards others. Her smile and joy were infectious, and I try to mirror that in myself and touch people’s hearts as she did.”

For more information visit Letters of Love.

Please donate to Grace’s GoFundMe and help Letters of Love to expand, publish a children’s book and continue to reach more children in hospitals around the world.

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Images courtesy of AFutureSuperhero and Friends and Balance Dance Project
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The day was scorching hot, but the weather wasn’t going to stop a Star Wars Stormtrooper from handing out school supplies to a long line of eager children. “You guys don’t have anything illegal back there - any droids or anything?” the Stormtrooper asks, making sure he was safe from enemies before handing over a colorful backpack to a smiling boy.

The man inside the costume is Yuri Williams, founder of AFutureSuperhero And Friends, a Los Angeles nonprofit that uplifts and inspires marginalized people with small acts of kindness.

Yuri’s organization is one of four inaugural grant winners from the Upworthy Kindness Fund, a joint initiative between Upworthy and GoFundMe that celebrates kindness and everyday actions inspired by the best of humanity. This year, the Upworthy Kindness Fund is giving $100,000 to grassroots changemakers across the world.

To apply, campaign organizers simply tell Upworthy how their kindness project is making a difference. Between now and the end of 2021, each accepted individual or organization will receive $500 towards an existing GoFundMe and a shout-out on Upworthy.

Meet the first four winners:

1: Balance Dance Project: This studio aims to bring accessible dance to all in the Sacramento, CA area. Lead fundraiser Miranda Macias says many dancers spend hours a day at Balance practicing contemporary, lyrical, hip-hop, and ballet. Balance started a GoFundMe to raise money to cover tuition for dancers from low-income communities, buy dance team uniforms, and update its facility. The $500 contribution from the Kindness Fund nudged Balance closer to its $5,000 goal.

2: Citizens of the World Mar Vista Robotics Team: In Los Angeles, middle school teacher James Pike is introducing his students to the field of robotics via a Lego-building team dedicated to solving real-world problems.

James started a GoFundMe to crowdfund supplies for his students’ team ahead of the First Lego League, a school-against-school matchup that includes robotics competitions. The team, James explained, needed help to cover half the cost of the pricey $4,000 robotics kit. Thanks to help from the Upworthy Kindness Fund and the generosity of the Citizens of the World Middle School community, the team exceeded its initial fundraising goal.

Citizens of the World Mar Vista Robotics Team video update youtu.be

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To make room for newcomers, the club recently moved into a larger studio with a third station for apprentices or guest artists. Unlike a traditional fundraiser that supports the organization exclusively, Black Fluidity Tattoo Club will distribute proceeds from GoFundMe directly to emerging Black tattoo artists who are starting their own businesses. The small grants, supported in part with a $500 contribution from the Upworthy Kindness Fund, will go towards artists’ equipment, supplies, furnishings, and other start-up costs.

4: AFutureSuperhero And Friends’ “Hope For The Holidays”: Founder Yuri Williams is fundraising for a holiday trip to spread cheer to people in need across all fifty states.

Along with collaborator Rodney Smith Jr., Yuri will be handing out gifts to children, adults, and animals dressed as a Star Wars’ Stormtrooper, Spiderman, Deadpool, and other movie or comic book characters. Starting this month, the crew will be visiting children with disabilities or serious illnesses, bringing leashes and toys to animal shelters for people taking home a new pet, and spreading blessings to unhoused people—all while in superhero costume. This will be the third time Yuri and his nonprofit have taken this journey.

AFutureSuperhero started a GoFundMe in July to cover the cost of gifts as well as travel expenses like hotels and rental cars. To help the nonprofit reach its $15,000 goal, the Upworthy Kindness Fund contributed $500 towards this good cause.

Think you qualify for the fund? Tell us how you’re bringing kindness to your community. Grants will be awarded on a rolling basis from now through the end of 2021. For questions and more information, please check out our FAQ's and the Kindness Toolkit for resources on how to start your own kindness fundraiser.

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