This event was the first activity of CLF for patients, organized on a large scale, since its inception two years back.
The meeting was well attended by patients, family members and caregivers from all over the country. An audience of more than 150 comprised of approx. 32 Wilson disease patients, a hundred family members and rest were medical professionals and individuals interested in working for the cause.
The programme started with lamp lighting by young kids affected with Wilson disease, followed by technical talks by experts which included a hepatologist, paediatrician, psychiatrist, dietitian, and speech therapist; covering various aspects related to Wilson disease.
The panel of experts answered questions from the audience which ranged from investigations, treatment regime, when and how to take medicines, diet for patients, routine precautions in daily life routine like studies, jobs, marriage, among others.
Patients narrated their experiences on the disease in terms of how their health deteriorated, when it was diagnosed, how they accessed the treatment, importance of compliance and how they were faring in personal and professional lives. Some very sick children with cirrhosis could even avoid liver transplantation after starting treatment.
Some were young patients who have completed studies and are looking forward to settle life and marrying. Couple of patients were married and blessed with kids, and also doing well professionally. A patient set an example by not only taking care of herself but also adopted two wonderful kids after marriage. Handicraft items prepared by her were also displayed at the venue.
Exhibition of paintings by one of the patients, a 26 years young man, who suffered from Neurological symptoms due to disease, was arranged at the meeting venue. His paintings were appreciated by one and all. This young man in his speech shared his ambition of arranging exhibitions of his art and raising money for treatment of Wilson Disease patients. This positive spirit of not only fighting the disease for oneself, but also contributing for the betterment of other lives, was applauded by all patients.
Gauri a 17 year old girl and Kamal a boy of the same age had end stage liver disease with liver cirrhosis and its complications, and were advised that they could be saved only with the liver transplant. Gauri was on transplant waiting list until she got so much better that the team of doctors at Jaslok Hospital felt that she did not need a transplant anymore. She recently passed her standard X exams with flying colours.
Chiranjeev, a young man of 18 was referred for advanced liver disease requiring several hospitalisations for complications of cirrhosis when he bled spontaneously from various sites as his blood did not clot due to lack of clotting factors produced in the liver. He also developed ascites which needed to be drained time and again. At this stage he was referred for transplantation without a known cause of his cirrhosis. Given the young age of his cirrhosis he was thought to have Wilson disease and treatment was promptly started. His hospitalisation frequency gradually reduced and he could wait for about one and a half years to get a cadaveric organ. He got transplanted more than a year back and is leading a normal life having recently appeared for his standard XII exams.
Ashwini got diagnosed with cirrhosis and developed slurring of speech and tremors, which made even holding a cup of tea difficult. On being diagnosed with Wilson’s disease all her symptoms improved and she went on to have a normal married life and pregnancy, and is blessed with a beautiful two year old daughter. She is a successful professional, working in a leading computer firm. Though she could not make it to the meeting, she had sent a video.
Almost every patient wanted to share a point or two. Nishant’s father expressed his heart felt gratitude to Wilson Disease Association for getting trientene completely free of cost as he was not tolerating d-penicillamine. His son who was in liver failure is recovering well.
This forum is perhaps an example of how support and motivation provided to patients; can impact their lives; and how they in turn, tend to contribute to the well being of others.
Children’s Liver Foundation has now initiated the formation of its Wilson Disease Support group, which will be a mode for continuous communication between all for sharing and supporting.