Wilson Disease Support Group Meeting December 2023

The Covid pandemic was marked by multiple zoom meetings. The meeting on 17th Dec’23 was the seventh Wilson support group meeting organized by the Children’s Liver Foundation. It combined a fun outing with a support group meeting for patients with Wilson disease, accompanied by their relatives and caretakers. It included specialists from all fields involved in the management of Wilson disease including Hepatology, Neurology, Physiotherapy, Speech therapy, Ophthalmology, Adolescent medicine and a Nutritionist.

The patients gathered excitedly early morning on the 17th of December and were divided into seven groups with designated leaders who happily took up the responsibility. Patients ranging from age group of 5-55 years from all over India participated in the support group meeting. We then headed towards Alibaug- a small town across the sea from the Gateway of India through a private PNP ferry towards Mandava jetty, and private buses were arranged to take all us to the much awaited venue, Fountainhead resort. The fun started with the boat travel itself albeit only for a 45 minutes journey, with all in awe of the vast sea and Mumbai’s skyline in the background. No time was wasted as the program was super packed and introductions were started in the ferry itself. Patients introduced themselves with their names, places and the time since they were diagnosed with Wilson disease, kick starting a sharing and caring atmosphere. They realized right at the outset that they were not alone in suffering from this rare disease.

Once we reached the resort, the medical professionals introduced their specialty aspect of the rare disease, outlining their expertise in dealing with Wilson disease. After this, we headed for a specially designed delicious low copper lunch. During the lunch break, we had kept a “questions” basket where patients and relatives were free to write down any queries and drop them into the basket. The lunch break provided another great opportunity for sharing.

After lunch, everyone returned to the conference room with renewed vigour to participate in exciting, fun filled games through which all the post lunch sleepiness was dispelled. The games gave everyone a spirit of involvement, making them feel special within their teams eyeing the beautiful gifts kept in the background. After this, everyone was curious and keen to move to the next exciting session- experience sharing.

This session created a turmoil of emotions, raised confidence to live with dignity, attributed loneliness to purposeful living, and healed each one to make them realise that they are no longer alone in this journey. It helped and nourished them with motivation and inspiration from all the patients who have lived with the disease for more than 50-60 years and yet managed to remain fit and fine. Several issues were addressed including worries about marriage, peculiar issues seen in adolescent age group and many more… The session was inspiring and motivating and was a blessing for all patients and relatives present in the audience.

Following a tea break, the overflowing questions basket was addressed in the open amphitheater. The amphitheater was lit up with the specialists on stage, with an expectant audience on board awaiting answers to their genuine queries. After a 2 hours Q&A session, all were busy exchanging numbers and addresses to remain in touch with another. We had a group photo session of the Wilson patients family that illuminated the grandeur of the 7th Wilson disease support group meeting and parting hugs to meet again soon
Back in our buses, which dropped us at Mandava jetty, our private ferry was eagerly waiting to navigate us from the sea, leaving us with a heart full of enriched happiness, memories and a promise to have a bright future ahead. Dropped at the Gateway of India, Mumbai, we dispersed accordingly to our respective destinations. The meeting fulfilled the purpose of educating and understanding that Wilson disease is a rare disease but can be totally controlled if we took the right precautions.