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Patient Stories: Living with Lysosomal Storage Disorders in India
Real stories of courage from people across India living with lysosomal storage disorders, told in their own words.
The LSDSS Film
Stories from our community
Members of the LSDSS family share what life is like with Gaucher disease, Pompe disease and MPS. Tap a photo to watch their video.
Share your story
Your story can give another family hope
Every family’s experience helps others feel less alone. It also helps doctors, policymakers and the public understand what life with a rare disease is really like.
If you or your child lives with a lysosomal storage disorder and you would like to share your journey, as a short video, photos or in writing, email us and our team will get in touch.
Tips for recording a video
- Find a quiet, well-lit spot, facing a window if you can
- Hold your phone steady, or rest it on something
- Start with your name, city and condition
- Talk about your diagnosis, your daily life and what helps you
- Keep it to two or three minutes
Learn about these conditions
Find out about the symptoms, treatment and support available for the conditions in these stories.
Help more families write a story of hope
Your support helps families get a diagnosis, treatment and the care they need.