Connecting with the TGCT community
Rebecca, patient with TGCT sitting with a bike shadow
Rebecca, patient with TGCT sitting with a bike shadow
The power of storytelling
At EMD Serono/SpringWorks Therapeutics, one of our goals is to help fight the social isolation of having a rare disease by empowering people to tell their story. Your experience with tenosynovial giant cell tumor (TGCT) is unique and deserves to be told.
More Than TGCT series
We asked people with TGCT to share their story about living with TGCT—their struggles and what brings them joy. Check out their stories below.
Rebecca’s Story
Described by her friends as “unreasonably independent,” Rebecca grappled with the powerlessness of not knowing what was causing her knee pain. Now, years after a TGCT diagnosis, Rebecca thinks of TGCT as just one part of her larger, vibrant life story.
Rebecca sharing her TGCT journey in a community video
Rebecca sharing her TGCT journey in a community video
More than TGCT means that I am more than my diagnosis. The disease might slow me down, but I don’t let it stop me.
I love reading books of all kinds because I get to experience many different things and it makes me feel more connected to people.
Movement is really important for my mental health so it was very difficult to go from training for an endurance event on my bicycle to walking with a cane.
My first ride back after diagnosis and surgery was about eight or nine miles on my e-bike. It was so nice to feel the sunlight and the wind. I got partway up the rail trail and had to stop at an intersection. I looked to my right and saw a detour sign. It made me think that the past two years have been a detour—but now I’m back.
My name is Rebecca, and I am more than TGCT.
Viviane’s Story
A physician herself, Viviane speaks to the importance of advocating for yourself when it comes to TGCT. She has not let her condition keep her from working toward her goals and tapping into the community for support along the way.
Viviane sharing her TGCT journey in a community video
Viviane sharing her TGCT journey in a community video
The more I know about TGCT, the less invisible it seems to me. It just makes such a difference when you understand what’s happening to your body. My biggest tip is to talk to everyone you can possibly find who has the disease.
I’m not the same person I was before my diagnosis. Now I have a chronic disease that could flare up, and it’s really important that I speak up. I know my body best and I know what I need. I have to advocate for myself—nobody else is going to do it.
More than TGCT means to me doing everything I can. I love to dance; the music makes you want to get up and move. You can’t help but be happy when you’re there. I go swimming as much as I can. When I’m under the water, it represents peace. It’s so quiet—you can only hear your breathing.
My name is Viviane, and I’m more than TGCT.
Finding your community online
Visit the TGCT Support website or Instagram page to connect with support groups and read more about TGCT symptoms, diagnosis, and treatment.