Advice to Newly-Diagnosed TGCT Patients

Описание: Sydney Stern, Director of Giant Cell Tumor Programs at the Life Raft Group and tenosynovial giant cell tumor (TGCT) patient, gives 3 pieces of advice to newly-diagnosed TGCT patients.

TGCT are a group of rare tumors that involve the synovium, bursae, and tendon sheath. While these tumors are benign, they can grow and cause extreme damage to the surrounding tissues. There are generally two types of TGCT, a nodular form that typically can be treated with surgical removal of the tumor, and a more diffuse form that will require medical therapy. For the latter diffuse type of TGCT, the FDA-approved CSF1R inhibitor, pexidartinib, can be effective.

First, Ms. Stern urges newly-diagnosed patients to find a multidisciplinary health care team who have experience with TGCT. This will improve treatment and their prognosis.

Her second piece of advice is to find a TGCT community. As Ms Stern claims, rare diseases can make individuals feel isolated so it is important to find others with the same disease and engage with the community. Facebook groups and virtual support groups through www.TGCTsupport.org are available.

Third and finally, Ms. Stern encourages patients to be kind to themselves. TGCT, as well as most other rare, chronic conditions, is traumatic and/or can make one resentful towards their body.

To learn more about this rare disease, visit our TGCT Learning Center goto https://checkrare.com/tenosynovial-gi...