More than 300 fractures but the spirit is strong - Dhanya Ravi

Dhanya Ravi is suffering from Osteogenesis Imperfecta (OI) also known as Bone Fracture Disease. This is a rare genetic disease in which the bones of the sufferer are very weak. Due to this, she has faced more than 300 fractures since birth. She is an advocate of genetic and early diagnosis of rare diseases through public talks, fundraising, and awareness programs.

Dhanya was born in November 1989 by normal delivery. There was an atmosphere of happiness in the family. Her parents Ravi and Nirmala were overjoyed but worried about the newborn's constant crying and health. Dhanya was to be christened on the 56th day after her birth.

That day she kept crying continuously. The family members showed it to many doctors but even the doctors could not find out the reason behind it. Medical experts had identified the symptoms of the rare disease in the newborn. That was her first fracture. Her thigh bone was broken. Then the doctors introduced her parents to his disease Osteogenesis Imperfecta (OI) i.e. bone brittle disease. And also told that Dhanya will never be able to live a normal life.

In order to provide Dhanya the best medical care, her parents visited many hospitals in the country but did not get any concrete results. During the treatment for this genetic disease, Dhanya suffered several fractures. Even if she sneezed once, there was a danger of fracture of any of her bones. Because of this most of her time since childhood has been spent going to and from the hospital.

Dhanya could not be treated even with the Roding procedure (keeping the fractured bone on a metal rod) as there was a lot of ambiguity among her parents and doctors due to a lack of awareness. For the treatment of this disease, her parents took Dhanya to many hospitals across the country. At last, after counseling at the Christian Medical College, Vellore understood about the situation, and now taking care is the only cure.

At an age when children are busy buying toys, Dhanya was busy choosing her wheelchair. One aspect of the time was that when people asked 14-year-old Dhanya the reason behind her condition, instead of feeling sorry or embarrassed for herself, she would calmly explain about her condition.

She did not have the option of a mainstream school due to her precarious health. Then a woman named Victoria living in her neighborhood took responsibility for her education and started giving her home tuition for 1 hour every day. She did this of her own free will. It was her love for grains. She taught Dhanya till high school (10th). Later she completed the preparatory course from Indira Gandhi National Open University and along with this she also took a certificate in Novel Writing from Clumber Knowledge and Careers Private Limited.

Even in her youth, she continued to visit hospitals but Dhanya never let it dominate her. Dhanya never got distracted by her situation and always remained positive in her life. The turning point in Dhanya's life came when she came to know the other side of life which is going to remove any dependency, weakness, or pain.

Dhanya was deeply influenced by the world of classical music, cinema, and novels. She grew up listening to the music of composers and singers AR Rahman, KJ Yesudas, and Ravindran Master, a popular South Indian music composer and playback singer from Kerala. Music always helped mellow her mood. Influenced by writers Preeti Shenoy and Dr. Paul, Dhanya was inclined towards writing on subjects like being an avid reader and imagination.

The turning point in Dhanya's life came when she was informed about the Internet. Dhanya joined many chat forums and groups related to music and due to this she also made many friends. She came to know about a boy named Binu who was suffering from the same disease. Binu needed money for her surgery. This news made Dhanya feel that she needed to do something that would give her a purpose in life.

She went to Binu's caretaker Latha Nair, who was a social worker, to help her. She requested her friends for help online with Binu's surgery. Within no time many people came forward to help her. Before the surgery, Binu could only crawl but now she can walk comfortably with the help of a walker. 

Today she works as an assistant in a health center in Kochi. This experience of mobilizing people to help someone made Dhanya realize that she wanted to do something next. When Latha Nair opened India's first NGO (Amritavarshini Charitable Society) to help people suffering from Osteogenesis Imperfecta, Dhanya played an important role in it. She started spreading awareness about this disease to people through TV interviews, debates, and speeches.

She participated in many famous Malayalam television programs like Ningalakkum Akam Koddisaswaran, Idea Star Singer-6, and Ashwamedham. Also, with the help of organizations like ORDI and One Step at a Time, she started spreading awareness about the disease and the rights of such people. She supports mandatory genetic testing for all pregnant women. Along with this, early diagnosis is advised to advance rehabilitation. Apart from medicines and therapy, she also emphasizes family counseling.

Over the years, she has been associated with several NGOs working on rare and genetic diseases. From running marathons and TEDx Talks to giving motivational speeches at educational institutions, Dhanya is doing everything she can to reach out to as many people as possible. 

Such events have also widened her social circle, and now she has many friends who understand her situation and are always ready to help her. One such friend is Namita Kumari, a thalassemia patient. Namita is running a website called ease, Platform for Rare Diseases (OPFORD). It is a digital platform to connect rare disease patient communities, parents, and caregivers to improve the diagnosis, treatment, and care of rare diseases. Dhanya along with her colleagues helps in spreading awareness through Namita's website.

She has also been honored with several awards for her efforts in helping those suffering from genetic diseases. She has been awarded Brave Bangal Award in 2012, the Annual Inspired Indian Foundation (IIF) Award in 2014, National Award in the Role Model category for the year 2018 by the Department of PWD India.

Along with running a personal blog, Dhanya is also working as a freelance content writer, digital marketer, and columnist.

Despite always being confined to a wheelchair and bound by such a disease, she travels comfortably. She lives with her brother and family in America. She is working as a freelance content writer, digital marketer, and columnist for offline and online media, as well as collaborating with several NGOs in India.

Dhanya is also running a personal blog 'Dhanya Ravi – Where words speak'. She regularly updates her blog with her personal experiences and uses quotes she has shared with people to help them overcome their challenges.

TEDx and JoshTalk speaker, Dhanya Ravi has been named to the D-30 Disability Impact 2020 Honorees List. Which was launched by a Diversity - Disability Empowerment global movement award. The movement was started to mark the importance of the 30th anniversary of the Americans with Disabilities Act.