Patient Ambassador Name: Mr. Saurabh Sarin

A gist of our interview with Mr. Saurabh Sarin. The story of Mr. Saurabh is one of struggle and hardships. But just like every cloud has a silver lining, so does his story. Which is why, it is an honour to be able to share his experiences with the world. Currently residing in Berlin, Germany, Mr. Saurabh’s struggle began around the end of October 2022. It began with extreme pain in muscles and general fatigue and weakness. Since we had just come out of a global pandemic, Mr Saurabh decided to be cautious and visited a general physician. The doctor also attributed his symptoms to a viral infection and sent him home with some medications for the same. But even after this the pain and other symptoms persisted. Initially, he did not give much heed to the pain, but eventually it grew to an extent where it restricted him from doing basic daily activities as well, such as eating with a spoon or even drinking water. That is when his general physician suggested he visit a neurologist, as his symptoms could be due to a nerve compression or some other problem related to his spine. In his attempt to get an appointment with a specialist in Germany, Mr. Saurabh found out that the waiting time for that appointment is approximately 10 months. Due to his worsening symptoms, Mr Saurabh decided not to wait back in Germany, but instead to come back to India to get some medical aid. On getting back here, he started the process again by first visiting a general physician and a neurologist. They gave him some painkillers to begin with while they performed a few tests to see what the problem was. The medications helped a little but the doctors soon found out that there was nothing wrong with Mr. Saurabh’s spine. That is when they suspected Myositis and suggested him to visit a Rheumatologist, who after running a few tests diagnosed Mr. Saurabh with a special kind of Myositis in which he had Anti-jo 1 antibodies in his body. Immediately started him on Prednisolone, a steroid and Mycophenolate mofetil, which is an immunosuppressant. This is also the time when, in his efforts to find some resources and to understand his condition better, Mr. Saurabh came across Myositis India Org. He contacted the organisation with regards to his disease and also had a one-to-one session with Dr. Rohit Aggarwal, who provided him guidance on his further course of treatment and After getting his treatment, Mr. Saurabh went back to Germany, but on his return, he realised that the diagnosis and treatment he had received in India would not be considered there. So, he had to go through the procedure of diagnosing his disease for the second time in Germany. The entire process was very tiresome and disheartening. But Mr. Saurabh considered himself lucky that he was one of the few patients who didn’t have to struggle for relatively long, and got his diagnosis relatively quick, thanks to the doctors he had consulted back in India. For a few months, Mr. Saurabh had relief from his symptoms and everything was looking good. He believed himself to have gotten over the hard part of the disease. But, as soon as the dose for his medication was lowered, his symptoms would get worse and he would have to face the same difficulties again. During this period, when Mr. Saurabh visited his doctors in Germany again, they suggested he start a stronger and more aggressive medication for his disease. The side-effects for these medications would be serious and on consultation with his doctors back in India, including Dr.Rohit Aggarwal, he realised that it would be easier for him to handle and go through his treatments in India, than in Germany. In Germany, it was just him and his wife who had to take on the whole ordeal by themselves. But in India, they had their family and friends and an entire support system which could help Mr. Saurabh through this hardship. Because of this, he decided to move back to India for good and get all his further treatment here. Currently still on his treatment journey against this rare disease of Myositis, Mr. Saurabh is just as optimistic and hopeful as ever. He has made a great recovery from all his symptoms and is more than ready to face whatever challenges lie ahead of him. He gives full credit to his family and social circle, especially his wife and his sister for providing him with unwavering support throughout this ordeal. He believes since myositis is such a rare disease it is his duty to help spread the word about it so that the awareness in the general public increases and it gets easier for patients to get their diagnosis. Apart from spreading awareness, Mr. Saurabh also wants to help his fellow patients by letting them know that they are not alone in this journey and that there is a bunch of people out there who are more than willing to help them overcome this disease. We are grateful to Mr. Saurabh for sharing his experience with us and salute his generosity and altruism in helping others who might be going through something similar. He is indeed a great inspiration for all of us.