Actor and influencer Adam Rose doesn’t shy away from talking about Gaucher disease. He’s open about his experience and wants to shine a light on rare diseases and chronic illness.
Adam Rose, known for acting roles on “Veronica Mars” and “L.A.’s Finest,” was born with Gaucher disease (pronounced go-SHAY), which affects 1 in 40,000 live births. It’s a genetic condition in which the body can’t break down lipids, the fatty substances in organs. The lipids build up and strain organs, including the spleen and liver.
There are three types of Gaucher disease, and Rose has type 1, which affects 95% of people with the rare disease. Symptoms typically include enlarged spleen and liver, bone problems, and fatigue.
Living with Gaucher disease
Rose, 35, has known about his rare disease most of his life. He was diagnosed when he was 8, after a new pediatrician noticed his spleen was enlarged.
“I was having some symptoms,” he said. “I was really short for my age, I had a pretty bad complexion, my blood did not clot very well, and I had really low energy.”
A CAT scan showed Rose’s spleen was 16 times its normal size — bigger than a basketball in his stomach. A bone marrow test confirmed he had Gaucher disease.
Rose doesn’t remember a lot about that time, but he does recall getting infusions at the hospital twice a month. These days, he has checkups with his doctor and gets annual bone density tests and MRIs, and he receives a monthly infusion administered by a nurse who comes to his home. He was getting his monthly infusion, which lasts about an hour and a half, during the phone interview for this article.
He’s grateful to spend quality time with his wife, Joanna, and their son, Emmett, who was born in 2021. Since Gaucher disease is inherited, Rose was worried about passing the disease on to his child, but both parents must be carriers of the Gaucher gene. Luckily, Rose’s wife is not a carrier.
“Blue cardigan guy”
Rose is active on social media, especially TikTok, where many of his videos have gone viral. There, he’s known as “blue cardigan guy,” but he didn’t start that way.
Usually, he wears hoodies when he shoots his videos. However, one day, all his hoodies were in the wash, so he wore the blue cardigan — a gift from a brother — and the video went viral. Soon, fans recognized his look and demanded he wear the cardigan all the time.
While his videos typically feature fun observations; TikTok trends; and special guest appearances from actors like Jessica Alba, Ashley Tisdale, and Jensen Ackles, Rose is also using his platform to talk about rare diseases. In one of his videos, he tells his eight-year-old self that everything’s going to be OK, even though his rare disease doesn’t have a cure, and it will limit him from playing sports and doing a lot of things his peers can do.
“Telling that side of the story is really important to me, because I think a lot of people with chronic illness feel like it’s going to define the rest of their lives,” Rose said. “I think I’m a good example of someone who has not let their chronic illness define their entire life. I’m lucky enough to have an illness that does not force me to do daily medicines, daily infusions, or impair me in any real way. I’m one of the lucky ones.”
