On 29th November Sneha along with a panel of doctors from Jaslok hospital organized a day picnic to TIkujini wadi water park for Wilson’s disease patients who were accompanied by both or one parent. Truly a memorable day. I will go out on a limb and say this one behalf other Wilson’s patients that ‘’It was one day when we looked forward towards meeting with our doctors with excitement and enthusiasm that knew no bounds.’’ The picnic was fully sponsored right from our meals to the transport.
Living with this disease can take it’s toll on your outlook on life, things are and get depressing. You eventually begin functioning like one too. To have Wilson’s is to stand out from the rest of the crowd ie your friends, your social circles. So naturally you get envious wishing you too could eat drink and not be dependent on some pills to live. But when you are surrounded with fellow Wilsonians, having Wilson’s doesn’t sound as terrible, because you know deep down that you are not alone, someone understands, someone other than you too lives with Wilson’s and that’s very comforting to know, also it’s much more encouraging to hear about the progress of a fellow Wilsonian’s health, it gives us hope, reminds us that with just the right amount of hard work and practice we too can accomplish if we set ourselves up to the task. In addition to that, it covers more ground for conversation and friendships with fellow sufferers.
I sat on all the rides that they permitted, some were nothing great, but others truly remarkable. Like I was so caught up with the Merry Go Round Swings that 1 ride just wouldn’t do. It was the first time I tried it, I shed all my inhibitions and misconceptions and truly let go. I became a child as I enjoyed the rides. There was joy, freedom, glee everything that I thought wasn’t possible as a grown up. We captured some pictures to cherish the memories and the friendships and happiness we felt.
We commenced our picnic with Doctor Aabha Nagral answering the queries we had and in addition to that she also provided additional information regarding Wilson’s. A special thanks to everyone who made it possible so that we could gather and have fun. Thank you Sneha and Dr Aabha
Thane: Twenty-six-year-old Janice Mendonca was a part of an outing organized by a support group on Saturday to a water park in the city and actively enjoyed every ride. Nothing exceptional apart from the fact that she is battling Wilson's disease, a genetic disorder for the past eight years. She participated in the outing with 24 others, who are also suffering from the disease.
Mendonca said, "People often look at us as if we are abnormal only because of a defect in a single chromosome. Being with those around me who know what I am going through, I feel like there is nothing we cannot do provided we take our medication and treatment.
Dr Aabha Nagral of Children's Liver Foundation, the group that organized the outing for these patients, said that it is only with the help of such outings that these children can move out of their isolated shells and develop friendship, which will help them emotionally and medically.
"As these children remain in isolation, getting them to socialize is essential and this is where support groups play a big role. Sometimes, we have patients who skip medicines and get lazy when it comes to physiotherapy. It is when they see their peers recovering quickly that they too start taking their treatment seriously," added Dr Nagral.
===Poster of the picnic===