Children’s liver foundation had organised ‘living with Wilson’s’ , an interactive support group meeting for patients with Wilson disease on 29th August 2015.
All the patients and visitors were greeted by Mrs Sanjeevani Patwardhan, herself a patient of Wilson’s disease. She tied hand made rakhis (wrist bands) to all and gave them sweets made of Moong dal (a pulse low in copper content)
Eminent panelists included neurologist Dr Pettarusp Wadia , Hepatologist Dr Aabha Nagral, dietician Ms Suvarna Sawant, Speech Therapist Dr. Bakul Parulkar and physiotherapists Dr Ajit and Dr Usha. Patients interacted with the panel enthusiastically. The discussion focused on trivial but important issues faced by patients of Wilson’s disease related to medication, diet and simple home based physiotherapy. Dr Nagral gave an overview of the disease and how exactly it manifested in different forms. Dr Wadia emphasised the need for good compliance and patience on the patients and the care givers front as an important part of therapy.
Patients who have been on long term treatment of the disease, shared their experiences with fellow new ‘Wilsonians’ . They encouraged the fairly newly diagnosed patients and advised them on the need of regular treatment. One of the patients Janice expressed her wish of writing a book on her experience with the disease. She even recited a beautiful poem on her experiences with the disease. It was heartening to see the courage and enthusiasm of the young patient. Amongst the crowd was a boy Ojas who had needed a liver transplant to cure his Wilson’s and now had cleared his medical entrance exam and was all set to become a doctor. His story and words were truly inspiring. The patients urged Children’s Liver Foundation to organise a picnic of all patients with no caregivers around …
Saba – a patient from Karachi, Pakistan with neurological problems who is currently in Mumbai to receive treatment was accompanied by her mother and both found the interaction very encouraging and optimistic and felt that they were a part of the Indian family of Wilson disease patients
Mrs Sneha, a philanthropist, talked to the patients and discussed on various ways they could be helped, like providing water with lesser copper content, medicines at a sleeve price etc. the meeting gave her a direction to help the patients. We hope she would be able to help these patients through her endeavours.
When the meeting ended, the anxious faces of the patients and caregivers was filled with new hope and enthusiasm. They had learnt new things, cleared their doubts and discussed the difficulties they faced. They had made new friends, just like them and exchanged phone numbers. It was heart warming to see the patients go back happy and hopeful.
With the support of all our patients and doctors, we hope to be able to keep organising many such meetings and spreading awareness and hope.