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.
Wilson’s Disease Support Group Meeting
13th July 2019
Time of Event Event name Description
####2:15 pm Arrive at Nehru center
. Chance to interact with other
Wilson’s Disease affected Families
####3:00 to 3:10 Inaugural ceremony . Inaugural Speech
by Dr.Aabha Nagral
(Managing Trustee of CLF)
. National Anthem
#### 3:10 to 3:20 Short film - 1 A man climbs aboard a mountain bike and
returns to his native home of the Isle of Skye in
Scotland to take on a death-defying ride along
the notorious Cuillin Ridgeline.
####3:20 to 3:35 Experience sharing conducted by
. Dr. Kritika Tiwari
####3:35 to 4:00 Create your dream board (activity) Introducing the dream-board concept on an
easel.Participants competing will have to
create al representations of where they see
themselves in the future..
####4:00 to 4:20 Snacks in the house of talent Famished after all the fun?Satisfy your
hunger and view the incredible paintings and
crafts made by us
####4:20 to 4:30 Short Film - 2 Aabid Surti can’t stand the sight or sound of
leaking taps. For the past 11 years, the
84-year-old author-artist-cartoonist has been
visiting homes in his suburb in Mumbai, fixing
faulty taps for free.
####4:30 to 4:45 Experience sharing
. Manish G
. Manish Y
####4:45 to 5:00 Talent Show
. Manish Y
####5:00 to 5:10 Experience sharing conducted by
Dr. Kritika Tiwari
####5:10 to 6:00 Speech by well wishers/Trustee of
Children’s Liver Foundation
. Vinay Shetty(THINK Foundation)
. Vilas Unavane (CLF Trustee)
. Sneha Pathak (Rotary)
. Imran Sheikh (THINK Foundation)
####6:00 to 7:00 Doctor patient interaction
. Dr.Aabha Nagral - Hepatologist
. Dr. Kritika Tiwari - Pediatrician and
. Dr. Fazal Nabi - Pediatrician
. Dr. Azad Irani - Neurologist
. Safala Prasad - Dietician
. Dr Reena Javkar - Physiotherapist
. Dr. Shruti Shah - Physiotherapist
. Ritika Aggarwal - Psychologist
####7:00 Thank you note
.Photo Session and dream board
. Janice Mendonca
. Ojas Unavane
####Organising Team ####
Aabha Nagral, Cleon Pereira, Gauri Rane, Harshul Kathewad, Janice Mendonca, Jovita Mendonca,
Kritika Tiwari, Ojas Unavane, Priya Malde, Sanjeevani Pathwardhan, Smita Sawant, Wendy Mendonca