IV Couture: Turning medical waste into rare disease advocacy

In the spring of 2025, I set out to create a piece of art depicting both the challenges and the beauty of navigating treatment for hemophilia A. However, soon after I started the piece, my health plummeted, and I could no longer focus on art.

Over the course of a few months, I lost a third of my body weight, and doctors warned that any further loss would require a feeding tube. I was barred from dance and other forms of exercise for fear I would lose more weight. Doctors at three different emergency rooms told me nothing was wrong. My fourth ER visit in less than two months (in another state) led to a chance encounter with a bright young doctor who found the issue.

I was diagnosed with superior mesenteric artery syndrome, another rare disease, and needed major surgery so I could eat again. This was not the first time I had to fight for a diagnosis. Years earlier, I fought to be diagnosed with hemophilia as a woman. Now I was fighting again, for a second rare diagnosis, while barely able to eat. Far too many people in the rare disease community know what it feels like to be told nothing is wrong while your body insists otherwise.

One year after I stopped working on the piece, I was healthy enough to continue. It was a joy to create again and to express myself and my health journey artistically.

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Advocacy through art

Columnist G Shellye Horowitz’s fashion piece, IV Couture, is a 2026 RARE Artist finalist. (Courtesy of G Shellye Horowitz)

That experience is part of why the RARE Artist contest means so much to me. A program of the RARE Foundation (formerly the EveryLife Foundation for Rare Diseases), it showcases the convergence of art and advocacy in the rare disease community. For me, it is an opportunity to portray feelings that words cannot always capture. Living with a rare disease takes a toll. Even when we have wonderful medications that allow us to live healthier lives, the burden of care is real.

Many years ago, I was having breakthrough bleeds, meaning I was bleeding despite being on preventive treatment. My doctor recommended moving my IV infusions of factor VIII (FVIII), the clotting protein my body is missing, from every 72 hours to every 48 hours. Such a simple solution.

But then I did the math. That meant going from 122 to 183 infusions per year — 61 more needle pokes. Each infusion takes about 20 minutes from start to finish, which added up to 1,220 more minutes, or 20 hours, spent infusing per year. Almost one full day.

The burden is real.

I am a finalist

I am so excited to share that my piece, IV Couture, made the RARE Artist finals. It is a fashion piece — a shirt and skirt made entirely from medical waste gathered from my infusions. Wearing the burden, literally, as a garment made from my own treatment waste became a powerful symbol of all I carry with a hemophilia diagnosis. This excerpt from my artist statement captures what it means to me:

“IV Couture is my way of expressing gratitude for the treatments that saved my life, while refusing to hide the reality of what survival requires. Rare disease advocacy, to me, means showing the full picture — the burden and the beauty — so the invisible parts of this life become impossible to look away from.”

G Shellye Horowitz shows off IV Couture. (Courtesy of G Shellye Horowitz)

The skirt is made from butterfly needles, with orange butterfly wings at the top and tubing cascading as accents. Caps from saline syringes trim the skirt’s waist. The top is made from the caps of my FVIII vials.

Please vote!

There were 244 entries this year, and the judges chose 20 finalists to advance to a public vote. After being a finalist once before in 2022, I am honored to be back with a piece that is even closer to my heart. Last year, more than 3,000 people took part in the public vote. I would be so grateful to count you among them this year. Please consider voting for IV Couture!

Voting runs Oct. 9-23, and each person may vote once. You can vote at the 2026 RARE Artist Public Voting page.

The 10 awardees will travel to Washington, D.C., for Rare Disease Week on Capitol Hill. They will share their art at a congressional reception and join meetings with legislators to advocate for the needs of people in our community. Thank you so much for your support!

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.