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
Watch live proceedings of Hepaticon 2020
Watch inaugural video here, all videos here
On Saturday, the 25th of March, Children’s Liver Foundation in association with Indian Academy of Pediatrics, Mumbai organized their 5th collaborative meeting “Hepaticon 2017” a meeting on a single theme – “Wilson disease - Bench to the bedside” at Nehru Centre in Worli. The meeting was endorsed by Indian Association for Study of the Liver (INASL) and Movement Disorders Society of India (MDSI). Wilson disease is a rare autosomal recessive inherited disorder of copper metabolism that is characterized by excessive deposition of copper in various organs of the body, most commonly the liver and the brain. The interesting and yet challenging aspect of this disease is its myriad manifestations where patients may be as young as 3 years old to the adult 55 years old. The meeting served a much needed collaboration between Neurologists, Gastroenterologists and Pediatricians' experience of this disease whose manifestations may be complex and often get diagnosed late, misdiagnosed or even over-diagnosed. The conference was first of its kind where doctors from different specialties from different parts of India came and shared their perspectives and encounters with different presentations and outcomes of the disease. Besides our local faculty, we had institutions like AIIMS, Delhi, NIMHANS, Bengaluru, PGI Chandigarh, SGPGI, Lucknow, CMC Vellore, Apollo Hospitals Delhi and Chennai and ILBS Delhi and many others participate in the meeting. The highlight of the inaugural function was a poem recited by Janice – a patient of Wilson’s on her life journey from being a bed ridden patient to a normal life she leads now. Ojas – another patient of Wilson disease recounted his journey from presenting with acute liver failure to undergoing a liver transplant and now being well rehabilitated and pursuing undergraduation in Medicine. Dr Aabha Nagral of Children’s Liver Foundation, Dr Bela Verma from IAP, Mumbai, Dr RK Dhiman from INASL and Dr Pettarusp Wadia from MDSI inaugurated the meeting. The talks and presentations on this day helped us understand and opened our minds to the unlimited variables of how Wilson's disease can present. We were given interesting information about copper, how it can be beneficial in health and also how it's excess can damage our body. Through case presentations, management of different presentations was discussed and we learnt how differently the neurologists and gastroenterologists treat Wilson's. There was a healthy discussion and debate on whether the disease should be treated with zinc or penicillamine or a combination of both. Genetics, developmental pediatrics, speech therapy, physiotherapy, diet and psychology related issues of the disease were also discussed in great detail to emphasize the need for a more holistic approach. The audience was enlightened about the 600 different mutations Wilson's can have and the importance of family screening. The role of development, management of behavioural changes and counseling was emphasized by developmental Pediatrician and IAP President - Dr Samir Dalwai as being as important as taking medications. He proposed a collaborative study between CLF and IAP, Mumbai on studying the developmental and behavioural issues in these patients where very little work has been done. Light was thrown upon the unfortunate disappearance of the very important drug Penicillamine from the market, how much inconvenience it had caused the patients and how doctors and medical societies worked hard to get the medicine back into the market. In spite of the conference being on such a focused topic, the interaction amongst the delegates and faculty kept every person glued in for the 10 hours of the day that the meeting lasted with a resolve to develop guidelines in managing this disease with an Indian perspective.
The powerpoint presentations and video-recorded proceedings of the meeting will be available by 30th April 2017 on the website of Children’s Liver Foundation i.e.www.childrenliverindia.org
A UNIQUE DAY OUT !
On Christmas eve 2016, a group of enthusiastic young adults came together for an outing to the IMAGICA theme park organised by Children’s Liver Foundation(CLF) in collaboration with THINK foundation. They were all patients of thalassemia who have been successfully treated for Hepatitis C.
Worldwide, diseases of the liver are being increasingly recognized as a cause of ill health in adults as well as children. On the other hand effective measures to prevent, diagnose & treat them have now been developed. In India there is a general lack of awareness about liver disease, especially in children who hence suffer from delayed or missed diagnosis as well as lack of access to appropriate treatment options. With this background , a group of concerned individuals which also include medical professionals and parents have decided to set up this foundation to primarily create awareness on liver disease in children.
- To promote research into paediatric liver disease
- To spread awareness about paediatric liver disease amongst medical professionals and the public through lectures, educational material, website, conferences, workshops (national and international) and other media and activities. This includes post diagnostic measures as well as supporting & creating awareness of preventive measures as may be possible , including vaccination etc....
- To support children with liver disease and their families in all aspects including facilitating surgeries, making available medicines and investigative facilities , consultation with doctors, providing financial and logistics support and counselling to the families of such patients.
- To support & promote liver transplantation as one of the treatments of liver disease, this includes creating awareness for donation of liver.
- To support setting up of investigation and treatment facilities for children with liver disease