Most of the time, I am able to relate with the outside world, standing outside looking in. But it gets hard to relate with the outside world when you suffer from a rare disease. As Mary Graper (Former President of Wilson Disease Association) said,
“A rare disease is rare unless you are affected by it, then it is not so rare.”
On 9th August 2020, the 5th Annual Wilson’s disease meeting was held on google meet to discuss all things rare, peculiar and common that came along with Wilson’s Disease. Living in a completely different country, I was able to attend the meeting-an opportunity I didn’t want to miss. A panel of esteemed doctors -Doctor Abha Nagral (Hepatologist), Doctor Pettrasup Wadia (Neurologist and Movement Disorders specialist), Doctor Safala Mahadik (Dietician), Doctor Reena Jawkar (Physiotherapist), Ms Ritika Aggarwal (Psychologist), Doctor Kritika Malhotra (Pediatric and Adolescent Medicine), Doctor Ojas Uvane (Organiser of the meeting and Intern) were present along with 75 Wilson’s Disease participants and some of their family members. The meeting kick started with a quiz of 25 multiple choice questions regarding some basic information about Wilson’s Disease. Almost everybody participated quite readily and was very excited and I could see their competitive streak come out to play. It was a fun, engaging activity to gage how much knowledge we had about the topic at hand. After the quizz ended, each quiz’s question’s answer was revealed and depending on the nature of the question and the respective Doctor addressed it accordingly. Diet questions were addressed by dietician Doctor Safala Mahadik. We were then asked to post our questions regarding matters of Wilson’s disease on the chat box and they were answered by the doctors. Some of the most hottest topics covered were liver care, medicines, 24 hours copper urine, various questions surrounding food items, including an attempt to incorporate maggi noodles into the diet chart. Just kidding. Winners of the quizz were announced, Mukund Mohadikar, Kranti Kurwade, Shruti Pednekar, Sushil Mane, Tanisha Surjan. The meeting ended with everyone singing and dancing to the tune of kholo kholo by Shankar Mahadevan.
The meeting was a true success, very organized. A special thank you to Dr Ojas Uvane who spearheaded this meeting. From organising the activities to contacting the esteemed panel of doctors. All of this wouldn’t have been possible without a little help from the volunteers -Gauri Rane, Kashish Wadhwa, Cleon Periera, Pooja Bajaj, Firdaus Ibitsam, Ashwini Wilson, Pallavi Sawant. They took time out of their busy schedules to make sure every Wilson Disease patient and their family was familiar with google meet app. They worked tirelessly to help Ojas organize everything. It feels so good to be included, heard, acknowledged, celebrated for our unique traits, encouraged and taken care of by these very esteemed doctors. I wouldn’t have it any other way. Wilson’s Disease -one of a kind - Janice Raquela Mendonca