Abc Fashion Show Cicle Cell Anemia

Diagnosed with sickle cell disease as a 6-calendar month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. Only from a immature age, he too learned how to plough those trials into triumphs.

At age 9, a stroke due to his disease left him paralyzed on the left side. He had to re-acquire how to walk, talk, and use the bathroom.

Lee plant the stroke to be both a curse and a approval. While friends were making fun of him because of his differences, the newfound and unwanted attending led him to pursue interim — which eventually turned him to modeling, designing clothes, and walking the runway.

Tristan Lee is a model and fashion designer with sickle cell illness. (Photos courtesy of Tristan Lee)

"I know people are looking at me," Lee said, recalling his social difficulties afterward leaving the hospital. "So I'one thousand going to requite them something to wait at."

At present, 28 years later, the Williamsport, Pennsylvania, native is using his fashion blueprint background to raise coin and bring awareness to sickle cell disease.

A kid who was one time teased for looking dissimilar is now a man recently honored as i of 6 "patient heroes," and will represent North America in the Rare Disease Day international entrada led by Eurordis-Rare Diseases Europe.

Lee's profile, along with those of the 5 other rare disease heroes in Australia, Malaysia, Brazil, Kenya and Norway, are featured in the Rare Affliction Twenty-four hour period global campaign.

Rare Disease Twenty-four hours was launched by Eurordis 13 years ago, and has since become a global effect bringing greater awareness to rare diseases. Information technology started on Feb. 29, 2008, a rare jump year, and is now celebrated on the last day of February every year.

U.S. participation in Rare Disease 24-hour interval began in 2009, and more 100 countries were participants concluding year. This yr, because of COVID-19, many events are online only.

" Rare Disease Day is  a n  opportunity to enlighten t he public near issues affecting rare disease patients such as overcoming health inequities,  including the  lack of understanding around rare conditions  and challenges patients must face up to even get an accurate diagnosis," Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), said in a argument to BioNews Services, which publishes this website.

Before Lee became the confront of sickle jail cell disease and rare illness in N America, his first starring role was as a 9-yr-sometime Johnny Appleseed in community theater shortly after his stroke.

When he was xiv, his mother signed him up with Barbizon modeling schoolhouse in nearby Harrisburg, Pennsylvania, where he learned the ins and outs of modeling, paying close attention to clothes, design, and sketching.

"During school, when I was supposed to be doing math or something, I daydreamed and merely sketched dissimilar shirts, pants and just any inspired me," Lee said.

He also dressed impeccably. From middle through high school, all he wore was Tommy Hilfiger, earning him the nickname of Tommy Boy. His other moniker was Divo, instead of the female diva. The name stuck, and it's now role of his style line, DiVo Stars, which raises funds and sensation for sickle cell disease.

He brought five sketches to the fashion design bus Valerie Beggs some seven years ago. In the following months, those five sketches became the basis of a local fashion show and leap-started Lee'southward career on the runway, and his advancement for sickle prison cell affliction. He went on to produce loftier-quality fashion shows in and effectually Williamsport, a city known primarily in the U.Southward. as the site of the Petty League Globe Serial.

Tristan with his husband, Andrew Schlachter.

After working his manner up the mode world totem pole, Lee showed a 35-slice couture collection equally part of New York Fashion Week in September 2018, with the reddish, black, and white theme of Sickle Cell Awareness Month. Acquirement generated from every fashion show DiVo Stars produces goes direct to sickle cell organizations.

Apart from DiVo Stars, Lee continues to model with a inability agency and to act, and is at present looking to kickoff with voice-over work. He credits his faith in God and encouragement from two praying grandmothers with getting him through each mean solar day, between his decorated professional person schedule and his unpredictable battle with sickle jail cell disease, which tin can strike at any moment.

"I really have to dig into my faith and really trust in God to just have my life and practise great things with information technology," Lee said. "He just continues to kind of show up and show out for me, and that'southward how I make it."

Originally given a xx-year life expectancy, Lee says he's outlived it because he'south always been surrounded past knowledgeable doctors. Growing up, his best doctors came in teams of three, a comparison Lee likes to brand to the Holy Trinity of Christianity — the Male parent (God), the Son (Jesus), and the Holy Spirit.

A team of three helped him recover from his stroke as a child. Now his main care and two specialist physicians are all with Divine Providence Hospital in Williamsport. One doc in item, Charles Kofi Agbemabiese, a specialist in hematology and oncology, was instrumental in helping Lee transition from pediatric to adult care.

"I was blessed to be with him for 14 years," Lee said.

While the care for sickle prison cell disease has drastically improved in recent years, no "universal cure" exists, as Lee puts information technology. The goal, he said, is to make sure babies born with sickle jail cell are cured right away, and able to be free of this disease for life, an objective that resonates with rare disease communities around the earth.

In a NORD interview ahead of Rare Disease Day, Lee said that he is on "borrowed fourth dimension," given his diagnosis. He spends as much time as he tin with his family when he's not working his way upwards in the entertainment industry, sending skillful morning time texts to his mom, and waking upwardly adjacent to his hubby of 4 years, Andrew Schlachter.

"Having a rare illness similar sickle prison cell, and understanding that every moment, every breath counts. I merely attempt to focus and hone in on everybody who'southward of import to me," Lee said.

Every bit Rare Illness Day rounds the corner, his lasting message every bit a "patient hero" is to, equally NORD's Rare Disease Day logo puts information technology, "show your stripes" and be yourself.

"There might exist sometimes where it's hard and you want to surrender, only only don't. Because the fact that you lot are living this life and you were chosen to live this life simply proves that you are great, and you take greatness inside of you," Lee said.

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