On Sunday, 22nd September 2024, we hosted an insightful session for desmoid patients and caregivers, led by Ms. Vaishnavi Vishwas, Ph.D. scholar from AIIMS, New Delhi.
Key Highlights:
- Desmoid tumors are benign, not cancers, and should be managed by sarcoma specialists in a multidisciplinary setup.
- Surgery is not the first line of treatment. Ms. Vishwas explained the importance of active surveillance and beta-catenin mutation testing.
- Side effects of Sorafenib were discussed, with hand-foot syndrome, high BP, hair fall, and pain being the top concerns of patients. Some female patients also reported menstrual disturbances.
- The importance of counseling during treatment was emphasized, as it plays a vital role in supporting patients through their journey.
Inspirational stories were shared by patients: - Amita Maurya: Stays busy and distracted to cope with stress.
- Kailash Pathak: Embraces yoga and an active lifestyle for motivation.
- Mahesh Singh: Shared his journey with desmoid.
- The session ended with Kailash Pathak’s uplifting song and a virtual dance by Sarita Sharma, boosting everyone’s morale.
70 patients joined to raise awareness as we continue to fight and support each other during Desmoid Awareness Month.
