Click here to view full album

The Children’s Liver Foundation hosted a Wilson’s Disease meeting on 13th July, 2019 at 2.00 pm Nehru Centre, Worli. The meeting was well attended by roughly 46 patients some of whom were accompanied by their family members or friends. It was appalling to see the many Invitees & doctors attend and give their support in their fields of medicine and research.

The meeting began with a silent national anthem. The patients experience sharing was one of the core ideas to the Wilson’s disease Support group. Many of them spoke about their lives before and after being diagnosed with Wilsons Disease. This encouraged many patients as well as parents to speak up about the same. This was the most touching part of the seminar and brought many to tears listening to fellow Wilsonians and their parents speak. It was beautiful to see how much some of the most appreciative parents totally trusted and relied on Dr. Aabha Nagral and her team of specialists for treatment. The bottom line to this sharing was never give up - the battle can be won.

Some of the talented Wilsonians presented their works of arts and crafts. The paintings by Dalvinder and Ranson put the judges in a dilemma as to who to judge for the prize on the Talent show. Among others Sanjeevani had a lovely display of her craft works, Ankush sang, and a poem by Janice.

Some invitees and doctors spoke about their work related to Wilson’s disease and other diseases like Thalassemia, hepatitis etc. Post a few experience sharing sessions, the patients were asked to think of a dream they’d like to accomplish in the next 5 years. This could range from being simply happy with oneself to having a family. This dream was to be expressed on each patient’s personal dream board given to them. They were very creative with the presentation of their dreams. Others just did what they were good at, prizes were given in age group categories to the best works. This activity was initiated with the goal of encouraging patients to dream and motivate them towards higher achievement than yesterday. Post few more experiences that were shared there was a doctor patient interactive session where patients inquired about the problems that they are facing with regard to the disease and it’s management. This was another important aspect to the meeting because many a time patients may experience similar side effects of medication or the disease itself or even have doubts about the diet one has to follow post fresh diagnoses. The programme came to a close with a thank you poem that was written by Janice.

All in all, the meeting was one to remember with all the conversations one could have with the patients, family members or close friends while also spreading awareness about the disease. Such meetings have come to form an integral part of scientific inquiry on the part of doctors who express interest in such rare diseases and most importantly that they be supported in their intention to do the same. The session ended at 7.30 pm.