Real journeys from people living with myositis and their caregivers. These stories bring hope, courage, and connection to our community.
Shally Puri · Autoimmune Inflammatory Muscle Disease
Mr. Sunil · Autoimmune Inflammatory Muscle Disease
Mrs. Damchen · Polymyositis (Inflammatory Autoimmune Muscle Disease)
Mr. Prashant Verma · Inflammatory Myositis
An Encounter with our Patient Ambassador Mr.Prashant Verma. A tale of resilience and triumph. We interviewed our patient, Mr.Prashant Verma. His story of disease and an inspiring recovery is really worth sharing. Prashant sir's ordeal began in August 2020 when he started experiencing weakness and pain in his limbs. At first, he brushed it off as post-gym session fatigue, but the symptoms persisted and worsened with time. Swelling in his face and difficulty eating and swallowing soon followed. Concerned, he sought medical help, visiting several doctors, but none could pinpoint the issue. The timing of his symptoms coincided with the COVID-19 pandemic, leading to evaluations for the virus and its potential complications. When all COVID-related tests came back negative, he faced a frustrating period of uncertainty. The medical professionals he consulted initially believed it might be a psychological problem, leaving Prashant sir in a state of distress as his condition deteriorated further. After months of uncertainty, he was eventually referred to a Rheumatologist who, after extensive testing and evaluation, diagnosed him with Myositis. By the time the diagnosis was made, almost 3-4 months had elapsed since the onset of his symptoms. He was finally diagnosed on 1st of December 2020. Treatment commenced promptly after the diagnosis, and initially, Prashant sir experienced relief. He felt like he had conquered the disease, but fate had different plans. On another occasion, while taking medications for another illness, he suffered a severe relapse with even more debilitating symptoms. He found himself almost immobile, relying on a caretaker for basic tasks like eating and moving. The once independent and confident person now felt completely dependent on others. It was a crushing blow, and he struggled both physically and emotionally during this time. The situation worsened when Prashant sir contracted COVID-19 shortly after starting a higher drug called Rituximab. The virus further compromised his health, and during this trying period, his family members were isolated due to COVID precautions. This isolation was unbearable, and he was reluctant to be admitted alone into an isolation room. The experience was perhaps the most tumultuous phase of his life, with fear, uncertainty, and physical suffering looming large. Despite the challenges, Prashant sir continued with the treatment under the guidance of his doctors. Slowly, the storm began to subside, and he was discharged home. However, the road to recovery was arduous, and he still couldn't regain his strength and independence. Mentally, he was in a dark place, contemplating giving up. It was during this dark phase that he came across a story of a Tokyo-Olympics Volleyball player who had also battled Myositis. The athlete's determination and eventual triumph inspired Prashant sir deeply. That tale of resilience ignited a fire within him, and he decided to fight back with everything he had. He began incorporating physiotherapy and exercises into his treatment routine, determined to regain his life. With each passing day, Prashant sir made steady progress. Slowly but surely, he started to move his limbs, swallow, and work. The spark of life returned, and he was on the path to recovery. Supported by his family, friends, and medical team, he found renewed hope in life. Today, we are overjoyed to report that Prashant sir has made an incredible recovery. His determination knows no bounds, and he is even planning to scale Mt. Kalsubai, the highest peak in Maharashtra. His story is a testament to the power of perseverance and the support of loved ones. Looking back at his journey, Prashant sir credits his recovery to the unwavering support of his family, friends, and the skilled medical professionals who guided him throughout. Now, he has made it his mission to help other patients going through similar experiences, offering guidance and support during this challenging phase of their lives. We are honored to be associated with Prashant sir and commend his indomitable spirit in the face of Myositis. His remarkable fight against the odds serves as an inspiration to us all.
Mr. Saurabh Sarin · Antisynthetase Syndrome
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.
Mr. Chintan Shinde · Polymyositis (Juvenile-Onset Autoimmune Muscle Disease)
I remember getting tired from walking and my muscles beginning to cramp even after shorter distances," says our patient ambassador, Chintan, who has had polymyositis since he was 7 years old. Going from not having much information about what myositis is in 1991 to learning to cope with it throughout his life makes his story one of a kind. Here he is to share his story and bring greater awareness to the world. It all began in 1991 when his parents noticed him getting tired for walking short distances. It took multiple visits to different doctors to obtain a diagnosis, but the paediatrician he eventually saw was exceptional and showed a genuine interest in his journey to recovery. Right after the diagnosis, he was started on steroids and began physiotherapy. Since receiving the diagnosis, he has been proactive in seeking various methods to manage and improve his condition, including acupressure, taekwondo, and cycling even though even though some of these activities have been painful on him. But as he graduated through classes, climbing stairs to reach his classroom was one of the challenges he faced due to the disease process. However, after few years of treatment, he came to realise he could walk longer distances without experiencing muscle cramping. Despite these improvements the few limitations he has are that he couldn't drive, as he couldn't balance a two-wheeler or press the clutch in a car. Nevertheless, he has been working on improving these abilities and can now manage more effectively. Throughout his journey, Chintan has found that coffee alleviates some of the muscle soreness after challenging days. At the end of the day, he strives to achieve independence, which he did and is pursuing. His story, evolving from a lack of understanding about myositis in 1991 to coping with it throughout his life, stands as a unique testament.
