Double Take: Twins with RA Fight It Together
For almost two decades, RA was one thing the twins, 34, did not share. Ginamarie was diagnosed with juvenile RA (now called juvenile idiopathic arthritis) when she was 12; Annamarie was diagnosed 18 years later, at age 30.
“The pain started just after I turned 12,” says Ginamarie. She chalked it up to playing too much tennis, but the pain didn’t diminish. After seeing several doctors, she was finally diagnosed when she was almost 13.
Although the twins continued to do everything together, “JRA gave us a difference,” says Annamarie. “I was always a bit tougher, a bit sportier playing basketball, tennis and track. I carried her books, and I drove her around.”
Ginamarie’s teen years were marked with pain (for a few weeks, she couldn’t move her legs), countless doctor visits and a series of medications (including one that led to pneumonia). Through it all, Annamarie was by her side. “I called her my magical right arm,” Ginamarie says.
[caption id="attachment_804" align="alignleft" width="227"] Photos by Natalie Brasington, @nbrasington[/caption]
Ginamarie didn’t tell many people she had arthritis. “I didn’t want to be labeled as ‘sick,’” she says. But by the time she was 21, her perspective had shifted. “Instead of fighting alone, I wanted to stand up to [arthritis] and for people to see that I was standing up to it and maybe inspire others,” she says.
She began supporting Arthritis Foundation fundraisers – with Annamarie – and then got involved with advocacy. This year, the sisters became the first twin adult honorees of the Walk to Cure Arthritis in New York City.
Ginamarie has had her knuckles replaced and her thumb fused and she still has daily pain and physical limitations, but she lives an active life. The sisters went to college and studied in Venice together; they’ve worked as journalists and dabbled in modeling and acting, with multiple appearances on NBC’s Today show fashion segments. In 2015, they even competed on the VH1 reality show Twinning. Both live in New York City and have full-time jobs.
When the twins were approaching 30, Annamarie started noticing “shooting pain in my wrist; I couldn’t open door knobs. It was almost like losing pressure in my grip,” she says. She blamed it on too much texting. Then her knee started hurting. Eventually, she was diagnosed with RA.
Harry D. Fischer, MD, chief of the division of rheumatology at Mount Sinai Beth Israel, in New York City, is the twins’ rheumatologist. He says it’s uncommon for identical twins both to develop RA.
“Even though identical twins are genetically identical, only about 15 percent of the time will [the second twin develop] RA,” he says, noting that the rate is about 5 percent in fraternal twins. “While there is a strong genetic component to the development of RA, ... environmental factors are also important,” he says. “Even though [most twins] grow up in the same environment, they have different experiences and exposures, especially as they get older.”
Annamarie may benefit from RA treatment advances since her sister was diagnosed, he adds. “We have a greater understanding of the disease and how to approach it, and we have so many more medication options.”
While Ginamarie and Annamarie take different medications, both exercise daily (Annamarie loves to swim while Ginamarie enjoys cardio and stretching). Lifelong vegetarians, both also have reduced gluten in their diets, which they say has helped ease morning stiffness.
Because Annamarie had seen her sister’s struggles with arthritis, she had an idea of what to expect, but living it is different from witnessing it, “even in a twin,” she found. Now it’s her turn to derive strength from her twin. “Ginamarie is the light at the end of my tunnel – I know I am going to be OK, because she is,” says Annamarie. But, she adds, “Being an adult, having to rethink how to do things, versus being a kid, where you just grew up that way and it’s normal for you – it’s not normal for me.”
Ginamarie understands. “You can’t learn 18 years of what I had overnight. It might be quicker, but there [is] a process she [has] to go through.”
Annamarie is going through the process, with Ginamarie, naturally, at her side.
Author: ANDREA KANE
Photos: Natalie Brasington, @nbrasington