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#RareDiseases - Cure SMA India speaks for people with spinal muscular atrophy

As part of our July campaign, #RareDiseases, today we look at Spinal Muscular Atrophy, SMA, a genetic disorder that affects the motor capabilities. Cure SMA Foundation of India, a community of parents of children with SMA as well as adult patients, is working to raise awareness about the disease,

In late 2013, when Alpana Sharma's son was diagnosed with spinal muscular atrophy (SMA), she was devastated. Like many people, she had never heard of the disease.

After a 'period of darkness', Alpana went on to spearhead the launch of Cure SMA Foundation of India, a pan-India organisation inspired by a similar network in the United States.

The aim was to forge a group in India where families could share their struggles and fears as well as campaign for greater awareness and support.

I attended a CureSMA conference in the U.S and after returning to India, I started looking for families to form a similar group. People are so bogged down with caring, that this critical aspect is forgotten. I started a Facebook page in 2014 with 10 families and we created a map locator to find more people. - Alpana Sharma, Parent to child with SMA

Growing presence

Today, the Cure SMA Foundation of India includes over 300 families across the country and has emerged as a powerful voice in aspects like policy and pharma, even spreading awareness in the medical fraternity about the different ways that SMA manifests itself.

"We have collaborated with Organization for Rare Diseases and are working towards having more collaborations in the healthcare sector," says co-founder, Archana Panda, who is based in Gurugram. "Apart from the main objective of bringing SMA cure to India, we are working to create more awareness about genetic diseases and bring about a change in attitude towards accessibility, improving education system, etc. "

For an organisation that is just over five years old, there have been some important successes, like setting up SMA clinics in Kolkata, something largely driven by parent and trustee, Moumita Ghosh.

Ghosh's daughter, Debasmita was diagnosed with Type 2 SMA at 18 months. The early years were a struggle as doctors were clueless.

"We have understood that creating a database of our knowledge can help others," says Moumita. "We exchange notes relating to doctors, therapies, equipment, etc. We have told hospitals about conducting regular check-ups to identify problems early on and help maintain quality of life. "

All significant steps that, Archana hopes, will lead to greater sensitisation. "As the child grows older, challenges increase. Parents deal with a lot of stigma while caring for a child who is unable to stand or walk and has to be held constantly. All of this can be emotionally draining for a parent struggling to come to terms with the fact that their child is slowly deteriorating and may not live long."

Among the leading medical experts the foundation works with closely is Dr Ann Mathew, expert in neuromuscular diseases and founder of The Muscle and Nerve Clinic in Bengaluru. This is India's first paediatric neuromuscular service.

Dr Mathew has helped the foundation learn and adopt the protocol required for every child with SMA. The protocol calls for a multidisciplinary approach to deal with various aspects. "It is remarkable that given there are over 3,00,000 children with SMA in India but such little awareness and support," she says. The numbers highlight the need for a framework to address their needs. "All we need is for the medical community to come together and form groups. Parents being aware and reaching out to each other is the way forward."

It is said that the love of a parent is powerful enough to move mountains. That power is evident in the story of Cure SMA Foundation of India, an organisation that is building a countrywide movement of parents, one that is making the government and the medical community finally take notice.

ALSO READ:India's 1st centre for kids with neuromuscular diseases aims to offer total support to families

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