November 2021

Grace, courage, bravery. These words sum up Rama Rani, a 25 year old Muscular Dystrophy (LGMD) warrior. Perhaps shaped from years of facing obstacles, when one speaks with her it is her unbreakable spirit that shines through.

Her journey has been difficult- she was first diagnosed with cancer as a child. This led to a leg operation even before getting diagnosed and because of it her leg got twisted. She initially attributed her frequent falls to this. Eventually, at 11 years old, her father took her to Chandigarh for a few tests, it was determined that she has Muscular Dystrophy LGMD. So far, she’s had five operations to deal with these.

More than the physical issues, there has been a deep emotional toll. At first it was the uncertainty- not knowing what the diagnosis was or what was even happening. Then the questions- “why me?” “what do I do now”. Nobody else in the family had any history with the condition. Initially, the family was supportive. Hopeful for a cure, they struck together. However as time passed, this hope faded away and so did the support. Today, Rama Rani says she lacks this support system the most. Since her childhood, the road has been hard and bitter, and this was one of the hardest blows.

She says despite all this, she pushes herself forward.Her secret is in staying positive. She doesn’t see herself as weak. “I always think I’m strong. I always think I’m alright. Other than this I’ve got a lot of problems since my childhood. I never lost to them. I have to be strong because you never know about time. Anything might happen at any time- whatever happens happens for the good”, says Ramarani. It’s one life and we make our own happiness- despite the hardships, despite the worries, the pain. “So you see if you want to live happily or live crying about it. Time just runs away and it never comes back,” she says. “Happiness isn’t guaranteed for anyone, no matter what background they come from.”

When asked what advice she would give others, she said one thing- never lose hope. No matter what happens, whether people support you or not, never lose strength. She kept looking for good doctors, and eventually found Mr. Vasanth Rao (link to trustees page). She calls him her God, thankful for all the help he provided through the Trust. Thanks to this kind of support, she says her tiredness has faded away. With renewed vigour, she is seeking treatment today.
In the past, she has tried treatments such as Physiotherapy and Panchakarma under Baba Ramdev. She had also taken prescribed vitamins and tablets from neurologists. She had no government support for any of this- beyond getting tested and treated at government facilities. She doesn’t attribute this as a failing of the government though.

Looking forward, she says she wants to take care of her body and keep fighting- stronger than ever. She says that today, she is in a better mental space. After coming out of the jaws of death before, she is unbreakable. She also wants to give back- “Mr Vasanth Rao has also filled me with a lot of confidence and I just want to give back something to this trust. This foundation has really helped me out and I hope this reaches a lot of people like me. A person only understands something when they have experienced themselves, because of which this trust is doing so much to help everyone out. So I’m thankful for that “, she elaborated. Having received so much support from the Trust, she hopes to pay it forward by telling her story and inspiring others to stay positive.

“Are you sure?”, “What, are you serious?”, are some of the reactions Mohan Kumar got from his parents when he told them the news. He is a software engineer and generally quite an active person. Always healthy, he never took medicines, and staunchly believed in self-healing. Naturally, it came as quite a shock to everyone who knows him when he got his diagnosis of Motor Neuron Disease.

It was during a trek in 2018 that he first noticed issues with his co-ordination and a little weakness in his right hand. They were small things in the beginning- such as squeezing lemons and getting less juice than before, holding mugs and carrying small weights becoming more difficult, the right hand stiffening and then opening at certain instances etc.  He felt different physically as time went on. His wife noticed too and told him that he wasn’t like he was earlier.

Getting a diagnosis was difficult. The initial diagnosis was that of a motor problem with the right hand. He got muscle biopsies done and initially experts concluded that the weakness was possibly due to hypothyroidism and nutrition deficiency. In 2019, MND was diagnosed as the only possible cause.

Along with that, it was also disheartening to see the attitude of the medical professionals. Many were quite insensitive in their approach, especially when they didn’t know how to deal with the situation, saying things like, “You got MND? You’ll have 1 year, 6 months, five years,  ten years or twenty years to survive”. Mohan only remembers one doctor who was empathetic to him since the diagnosis.

It was the lack of awareness that made explaining the diagnosis difficult. His parents still don’t completely understand the diagnosis and think the problem might be due to something else. Despite this, they have comforted, supported and reassured him. “My parents and I sat down to discuss the problem and they assured me that there is no possibility of my mistake or because of something I did. They mentioned now that there is a problem, we have to live with it. So we moved on”, he remembers. His wife also had a difficult time in the beginning, falling into depression for six months. She too pulled through and is one of his strongest motivators. Together, they have kept up each other’s morale and positivity.

He is also thankful to people like MND Trust Managing Trustee Mr.Vasanth Rao for supporting and encouraging him. “Somehow I got to know Vasanth Rao. He also motivated me like anything. Every time whenever he talks to me he tells me not to worry and that I will come out of it. Those inspirational words always help.”

He also appreciates the work done by the Trust, mentioning how he hopes hospitals follow suit as well.

“Hospitals could keep us informed of some of the improvements, some advanced medicine which are coming or give any suggestion- like your Trust is doing, keeping us informed of the latest advancement in MND research. Such information will be beneficial to all affected patients”, he says.

Since the diagnosis he has tried acupuncture, stem cell injections, ayurveda and physiotherapy. Despite getting temporary relief from acupuncture, the weakness continued. “I started to drag my feet and could not lift my leg and cross the doorway, I used to get fed up. My friend noticed me dragging my feet instead of lifting my feet to walk. I developed foot drop.” Depending on his family for physical help has also been a source of disturbance for him, often ending up in him worrying about bothering his people.

However, despite all this, in the face of all obstacles it is his unbeatable spirit that perseveres. “People must realise that they get this disease not because of any mistake one has made. Those who get it have to fight, stay positive and keep happy and move on. I think this is the only way to fight the problem. Stay happy and stay positive- the mind is a big healer”, advises Mohan. “Only thing is-try to keep yourself happy. You know there is no cure, you keep yourself motivated- that’s it. We don’t know about tomorrow and cannot predict the day after tomorrow. One or the other thing will be waiting for us definitely and help will come in strange ways. “