We are glad we Organized desmoid education program and 102 th support group meeting to educate newly diagnosed desmoid patients and spread awareness and build companionship with desmoid families .
The program was attended by 38 desmoid patients . We thank Dr Bharat for giving enriching presentation and Dr Sameer Rastogi for addressing concerns of patients. Desmoid patient Ms Pragya mallik shared her desmoid journey and shared how her tumor size has shrunk size after starting sorafenib .Mr Gaurav Rajput shared his caregiver journey and explained what difficulties he faced during the treatment of his wife who is a desmoid patient and gave positive message to other desmoid patients.
Top most concerns of patients were Handfoot syndrome caused due to sorafenib, High BP, hairfall , stress and anxiety caused due to desmoid .
We thank all desmoid patients for joining support group meeting