Thom Filicia has plenty of experience when it comes to design. After all, the original Queer Eye cast member is a famous interior designer who’s written books on his craft and starred in a number of shows crafting beautiful spaces — not to mention his stint on RuPaul’s Drag Race in 2022. One thing Filicia didn’t have a lot of experience with: myelofibrosis, a rare form of blood cancer that his brother was diagnosed with 10 years ago.
Filicia remembers that time as “very scary,” he tells SheKnows. “At that time, there was very little information” on myelofibrosis, he explains. “I was terrified for my brother,” the Queer Eye star recalls. “I was concerned for his family, for his children… we went through a very scary process of not knowing what we were up against and what we were doing.”
Myelofibrosis occurs when too many blood cells are being produced in the bone marrow, which can “cause crowding of the bone marrow,” says Andrew Kuykendall, MD, a hematology expert at the Moffitt Cancer Center who specializes in myeloproliferative neoplasms, a group of diseases that includes myelofibrosis. That overcrowding of the bone marrow can lead to inflammation and scar tissue (aka fibrosis) in the bone marrow, Dr. Kuykendall tells SheKnows. The inflammation, in turn, can make it harder for your body to create blood cells; cause it to create blood cells in other organs like the spleen or liver, causing them to swell; and can lead to inflammatory symptoms like fever, chills, night sweats, bone pain, weight loss, and fatigue.
“All of this stems from the fact that this is an overproduction issue,” Dr. Kuykendall explains, “where your body is making too many blood cells.”
A stem cell transplant can cure myelofibrosis, and that’s where we come back to Filicia’s story. Filicia was identified as a “complete [stem cell] match” for his brother, meaning that “their white blood cells shared markers that would make it more easier for him to donate stem cells,” Dr. Kuykendall explained.
And that’s exactly what Filicia did. After a couple weeks of preparation, which Filicia describes as “making sure that I was in tip top shape, that my blood was able to be considered, and that it was the right blood,” the transplant took place over the course of a day.
“Being a donor, you are the lifeline for that person,” Filicia says. He remembers being “amazed at what I was able to do with my stem cells. It was not terribly invasive and it was a very successful process.” Thanks to the transplant, Filicia’s brother made a full recovery and has now been cancer-free for 10 years.
While his family’s myelofibrosis journey ended positively, Filicia still remembers those first days of confusion and fear following his brother’s diagnosis. That experience inspired him to partner with GSK to promote Mapping Myelofibrosis, an initiative that seeks to raise awareness of the disease, provide resources, and educate people about symptoms, causes, and treatments, essentially taking the guesswork out of those terrifying early days.
“One of the challenges with any rare disease is patients sometimes feel lost, struggling where to go and where to find information,” says Dr. Kuykendall, who also teamed up with GSK to promote the site. Even doctors, he adds, may not have much comfort or experience treating a condition like myelofibrosis. “What we want to do is put that power in the patient’s hand,” he explains. “[This initiative] allows patients to get good, reliable information… so they can become a real invested participant in their own care.”
Filicia agrees. “[Myelofibrosis] affects everybody differently and once you’re diagnosed, you really want to start to start to understand your personalized journey,” he explains. A big part of that is getting the right information as quickly as possible. “Mappingmf.com is something that I wish that existed when I was going through this and when my brother was going through this,” Filicia says. “It was the information that we didn’t have.”
Before you go, read about these celebrities speaking out about rare and chronic illness: