Muscular Dystrophy patient Registry for India
We at Ayushkama Foundation are aiming to develop Indian registry for Muscular Dystrophy patients. This patient registry collects information about patients who are affected by any form of Muscular Dystrophy
We are trying to fill the gap in information about individuals who are affected by a specific condition. Since In rare disease, they play an important role in the therapy development pathway.
Your Donation Will Make a Difference
Your generous donation allows us to fund the most promising projects in research labs; to bring scientists together to exchange ideas and collaborate; and to support a patient database to provide researchers a list of people to contact when clinical trials of promising therapies are available. Through your support, we can help patients and their family prepare for the future that can seem impossible.
Current Programs you can help for:
- Physiotherapy training for Muscular Dystrophy
- Nutrition program for Neuromuscular diseases.
- Awareness campaigns for rare diseases
- Genetic Diagnosis for undiagnosed warriors
Patient stories
I was diagnosed with LGMD at an early age of 13. As a child, I had a tendency to walk on my toes. I would fall over when trying to run & also struggled standing up from a chair or the ground. My greatest accomplishment is living a productive and active lifestyle despite the challenges that I encounter on a daily basis. LGMD has taught me how to keep a smile on my face without caring about ups and downs of life. It has instilled in me the appreciation for the support and love of my family members. It has also taught me a lot about myself. I have made life-long friendships with so many special people who have disabilities.
Tarun Patel
I was diagnosed with DMD at the age of 7 years. I started facing problem in going to school as it was not wheelchair accessible, wearing clothes myself due to increased weakness. When I started using wheelchair, it was mentally difficult for me and my family to accept this but after accepting it, we moved forward with positivity. I changed my school after sixth and continued my studies till class tenth. Then I completed class 12th from National Institute of Open Schooling (NIOS).
Having MD does not mean that your life is over. I urge you all to never give up education. You can prove yourself with the power of education.I am 18 years old now and my greatest achievement is completing class 12th despite many problems from accessibility to writing my exam. DMD has made me strong-willed, positive, calm and a person who never gives up.
Sarthak Gawari
I was diagnosed with LGMD at the age of 14, currently I am working as a Junior Assistant in a bank. LGMD is progressive disorder because of this I always keep myself ready to accept new challenges in life, it has helped me to manage my emotions, how to focus on my different abilities, how to believe in religion from heart, how to control my anger, how to stay away from bad habits.
I love to do meditation and making new strategies in financial market. My day starts with worshipping God to give me strength and to accept everything as well as to fight with odd situations.
-Bunish Garg
I was 7 when my parents were told by doctors that I might not have a long life due to MD. I continued to beat all odds and engaged myself in the world of creating art. I could not complete my education due to shortage of any accessible schools near my home. I started teaching from home. I was interested in various forms of art and creation, be it water painting, sketches, crafts, even designing clothes. I am also an exceptionally talented Mehndi/Tattoo artist and can draw with both hands. Nothing is impossible! I love challenges and trying things that seem impossible. In 2014, I participated in the Miss Wheelchair pageant and was crowned as ‘Miss Beautiful Hair’. I need a caretaker all the time but feel that people with disabilities should not be scared of the outside world.
-Payal Shrishrimal, Barmer
