Valentina Castaño and her fight against Ehlers-Danlos, an invisible orphan disease

“I know I can do this, and much more.”

At first glance everything seems to be fine, Valentina Castaño Ángel (16), is originally from Ibagué, Colombia, and has an unwavering sense of humor, a radiant smile and lots of energy to fight for her dreams.

But what makes her suffer is inside, because she suffers from a rare and invisible disease called Ehlers Danlos Syndrome , which causes such unbearable pain in her body that it even causes her to faint.

Despite being treated since she was 9 years old, doctors have still not been able to help her the way she needs, nor have they been able to find the origins of her syndrome, much less find a cure.

At Theramart, we contacted Valentina to tell us her story and what the disease she's been dealing with since she was a child is like . We also talked about her hopes, her personal battle, and her outlook for the future.

What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndrome is a group of inherited disorders that affect connective tissues , primarily the skin, joints, and blood vessel walls, due to a defect in collagen.

Approximately 1 in 5,000 people have Ehlers-Danlos, and there is currently no cure.

Among the most common symptoms, those who suffer from it have extremely flexible joints . So much so that they can continually dislocate, causing tremendous pain.

Hyperelastic and fragile skin is another characteristic of the disease. It bruises easily and can even cause large blood vessel ruptures.

“It is not the first time nor the last that they judge me without knowing me,” Valentina responded when we talked about her courage in resuming her studies.

His day begins at 6 a.m. He gets up very early to do a series of exercises to warm up his muscles and reduce pain for the rest of the day.

Then she devoted herself to studying hard, preparing to take physical therapy, occupational therapy, and speech therapy tests. After much effort and help from her mother, the young woman was able to resume her academic studies .

Together with her therapist and her mother, Luz Ángeles, they drafted a petition requesting that Valentina be allowed to enter tenth grade and enjoy the same rights as other young people her age.

Lack of opportunities: “Better go home and study.”

Despite some obstacles in the educational system and a lack of empathy from teachers who were unwilling to dedicate time to her and wanted her to stay home so as not to cause problems for the other students, Valentina managed to overcome her difficulties.

She realized that she couldn't rely on the opinions and judgments of strangers , and that if she wanted to achieve something and study, she was going to do it anyway, no matter what anyone said or how a restrictive educational system that lacks inclusion and tolerance categorized her.

Like any young girl her age, Valentina disconnects from the world by drawing, reading, and listening to music, three activities that completely distract her and allow her to live for a while on her own planet.

In her life project, others always come first; Valentina is supportive in every aspect.

“Joy, serenity, and love” are the three words that she says define her, and nothing could be closer to the truth, because despite life's storms, Valentina Castaño always carries these words as a banner to keep moving forward.

When we ask her how she sees herself in the future, she imagines herself with a college degree and a big house to take in stray animals.

He also plans to help those most in need and honor his mother by giving her the opportunity to have her own craft business, in gratitude for all her hard work and support.

Mother and daughter united against pain

While money is very important for advancing research into a rare disease , raising awareness about Ehlers Danlos Syndrome is also essential for the daily battle of those affected.

There are many people around the world who suffer from this syndrome, and seeing it shows that many patients are waiting for solutions or breakthroughs in research, not only for a possible cure, but also for treatments that improve their quality of life.

In Valentina's case, the only support she has is her mother, and right now they are experiencing many hardships, mainly because she must dedicate herself full-time to her care. Valentina's pain is sometimes unbearable and debilitating.

Living like this is no longer living. How can we help?

Their lives are consumed by trips back and forth to the medical center and out-of-town so Valentina can undergo further tests, which have not yet been conclusive. All of this requires effort and money.

Day after day, mother and daughter struggle with bureaucracy and a medical system that doesn't cover the tests and treatments the young woman needs.

Currently, the only solution to Valentina's pain that medicine has is to administer morphine in case of emergency .

Her mother created an online fundraiser to raise money to take her daughter to a Rare Disease Center in Bogotá for further testing in the hope of achieving some promising results.

Valentina's message for those in the same situation

To conclude our interview, Valentina gave us two pieces of wisdom for those who suffer from a rare disease or are experiencing health problems.

Initially, he recommended that, even if everything seems dark and difficult, we must lift our heads, move forward, and fight every day for our dreams.

And finally, he asked us not to forget that a day without smiling is a day lost.

Would you like to hear another inspiring story? Meet Gus Guevara, a tireless fighter for rights and inclusion. Learn about his life and legacy.