Polymyositis (Juvenile-Onset Autoimmune Muscle Disease)
Living with Polymyositis Since Childhood: Chintan Shinde’s Journey of Strength and Independence
Mr. Chintan Shinde
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.
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Key Insights
Challenges Faced
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Diagnosis delays and misdiagnosis
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Access to specialized treatment
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Managing symptoms and side effects
Key Learnings
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Importance of patient advocacy
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Value of support networks
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Lifestyle modifications that help
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About The Patient
Patient Name
Mr. Chintan Shinde
Condition
Polymyositis (Juvenile-Onset Autoimmune Muscle Disease)
Impact of This Story
This story has been shared to help others understand the realities of living with myositis and to provide hope and practical insights to patients and caregivers.
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