In 2007, Meryl Sarah Mammen was in her class 12 when she started experiencing acute muscle weakness. She was diagnosed with Pompe, a genetic disease that leads to severe muscle weakness, even affecting breathing. Her treatments began in 2011. With low mobility, she had to depend on a wheelchair to move around.

While Meryl struggled with weak muscles, a new problem arose: Wheelchair inaccessibility in most places, at home and outside, where there was a lack of ramps and stairs, making it difficult for her. They lived in a rented house in Delhi, which was not wheelchair friendly and the bathroom entrance was too narrow for a wheelchair. Wheelchair access is a basic requirement to ensure accessibility to Meryl and others living with rare diseases that severely affect their daily life.

A tailor-made house is not a luxury

Former Chief Justice of India DY Chandrachud lamented about his search for a house with special needs. He had mentioned that his daughters require a tailor-made house based on their needs, as they are on multiple therapies. The previous accommodation was modified to the specific requirements of his two daughters, Priyanka and Mahi, both diagnosed with nemaline myopathy, a rare disease that affects the skeletal muscles and makes them wheelchair bound. He had voiced the concerns of many families with rare diseases when he said that it was very tough to find a house that suited the non-negotiable requirements of his daughters.

Speaking to Happiest Health, Meryl, now 35, recalled how life changed drastically in 2007, when she was diagnosed with Pompe. When the family moved to Kochi recently, her parents ensured a tailor-made house for her, taking care of wheelchair access, multiple plug points in her room for medical devices to run, continuous electric supply, a customised toilet seat, a hand shower at her reach and also a mechanical bed.

While the focus has been more on the diagnosis and medical treatment, there is a lack of awareness about wheelchair accessibility and tailor-made facilities at home that are basic requirements for people with rare conditions.

“India is not wheelchair friendly,” says Meryl, who has travelled to different countries where wheelchair access is better to ensure that individuals with mobility impairments can participate fully in society, promoting independence and preventing discrimination.

A wheelchair-bound, who designed ramps

Sai Kaustuv Dasgupta, 34, who was diagnosed with brittle bone disease (osteogenesis imperfecta) as a child with multiple fractures, is wheelchair dependent. Dasgupta, a graphic designer, motivational speaker and music enthusiast, currently living in Bangalore, says that wheelchair accessibility is a fundamental right that should be guaranteed for everyone, not just for those with rare diseases. Accessibility is essential not only for individuals born with mobility challenges but also for those who may face temporary limitations due to age-related issues, injuries like fractures, or pregnancy.

The gated community he lives in Bangalore outskirts, has now become wheelchair friendly. “My house was modified and accessible; however, in the community, there were only stairs to the entrance of the park, mall or temple. I advocated the need for ramps in my community and we are now 80% wheelchair friendly,” says Dasgupta, who is an accessibility advocate, also guiding the design and ensuring the execution of ramps in multiple places.

He recalls that the threshold at the entrance of the house presents a challenge for those who rely on wheelchairs. Therefore, when the family stayed in Puttaparthi, Andhra Pradesh, they had to build a ramp to allow him to enter the house easily.

Elevator button lowered to suit her needs

For Anu Jain (41), an artist from Bangalore, who was born without limbs (tetra amelia syndrome) and is wheelchair dependent, accessing the elevator in her apartment was tough earlier as the lift buttons were beyond her reach. Based on her request, the manufacturing company lowered the operating buttons in the elevator of her apartment. “Only after the buttons were lowered, I could access them independently with my rudimentary elbows,” says Anu, whose house is also modified. To suit her requirement for toilet operation, the family has provided her with a bidet at a suitable height. In addition, she has also been given a metal and a wooden chair to climb onto the toilet seat.

Ensuring a continuous power supply

For parents of children with musculoskeletal rare diseases, apart from medication, therapy and wheelchair access, the focus has also been ensuring continuous power supply without interruption, as they require multiple devices to be functioning for their living. For example, for his daughter Nidhi Shirol, who battled Pompe and succumbed to the rare disease in 2023, Prasanna Shirol had provided three UPS to stand by as she was on a ventilator (Bi-PAP) machine to assist her breathing. For Nidhi, a mini-ICU was created based on her needs. At Meryl’s house, apart from a UPS backup, the family has ensured solar power generation, which is connected to the grid to take care of an uninterrupted power supply to support her breathing.

Source: https://www.happiesthealth.com/articles/muscle-bone/rare-diseases-wheelchair-friendly-ramps