Lack of awareness, stigma affects people diagnosed with Brittle Bone disease in India. Experts speak.
6 May is celebrated internationally as Brittle Bone disease awareness day or Wishbone day. In India, government officials or the medical fraternity is not fully aware about the condition. There is still a long way to go in order to create an inclusive society. Experts who have been diagnosed with Brittle bone disease speaks to Newzhook.
Osteogenesis Imperfecta (OI) or the Brittle Bone disease is a genetic condition that affects the bones of a person. Every year, 6 May is celebrated to create awareness about Brittle Bone disease. In fact, it is popularly called as the Wishbone day. This year, awareness campaigns and programs were low-key due to spread of COVID-19. Staying home and staying safe was undoubtedly the apt thing to do. India’s disabled community, who ae diagnosed with Brittle Bone disease says that when it comes to awareness about the condition, there is still a long way to go. Experts speak to Newzhook.
What is Wishbone day?
OI affects bones of the person who has been diagnosed with it. Categorised as a rare disease, OI results in breaking of the bones very easily. It can be mild or severe depending on each person. But most of the times, the person has to go through excruciating pain. In some cases, OI can be acquired from parents, but this is a genetic condition.
Over the years, various studies have been done on OI. Clearly, there is no cure for the condition. The person who has been diagnosed with it can follow a healthy lifestyle in order to stay safe from continuous fractures. Medication and therapies can help to a large extent to make the person self-reliant and independent. Sometimes, the condition can affect other parts of the body too.
Wishbone day was started with the sole aim to spread awareness about the condition. For people who were diagnosed with OI, the struggles are many. Lack of government support or awareness about OI only makes things worse.
Dhanya Ravi, a disability rights activist and founder of NGO Aasman Foundation in Bengaluru was diagnosed with Brittle bone disease. But this young lady has not let a disability stop her from holding fire-brand speeches and motivational talks. Dhanya has been vocal about concerns of people with OI since the past decade.
“I want to share my journey because I wish to have a generation free from OI and rare diseases. I wish that at least one person should not go through the stigmas that I went through or are going through now. It is a life threatening condition. I believe the only way we can drive this is by creating awareness”, she says.
Dhanya further adds that every couple must undergo screening before marriage in order to start a healthy family life. “Government must make such tests mandatory as OI and most rare diseases are incurable. OI warriors in our country must advocate for themselves and follow the medical treatment available to strengthen the body and improve movements. My journey with OI started from birth. When I look back on how I battled my pain and uncertainty, I feel whatever I’am now is a miracle. My willingness to work on myself helped me find peace and love within”.
28 year old Jeevan Manoj is a software engineer from Kerala who was diagnosed with OI early in life. He is a successful young man who has beaten a disability.
“The biggest problem faced by people with OI is lack of awareness in the society. India can definitely be more inclusive in terms of infrastructure and so on. When infrastructure is enabled, the disability vanishes. So hope this is enlarged to a bigger scale. The government has a lot to do. Only they can make a difference. I feel more private companies are inclusive than government sectors. Change is happening very slowly. Accessibility must be provided without hassles”, he says.
An urgent need for awareness about Brittle Bone disease
Archana Palahalli is the founder of Indian Osteognesis Imperfecta Foundation. Archana did not let a disability stop her from doing what she loves best and social work it is!
“In India, there is a serious lack of awareness about OI. Concerned departments must step up and do their bit. This includes government officials, NGO’s and even medical staffs. We must all work together. In rural areas, people do not have any awareness about OI. So things are worse for those who have been diagnosed with it. There are only primary health centers which do not have any medical facilities”, she says.
22-year-old Fathima Asla is a medical student from Kerala who was diagnosed with OI a few days after birth. Her father was also diagnosed with the same condition. Asla says, “I feel people are now being more aware about the condition. More people know that this is a genetic problem. Earlier, they were unaware or least bothered. So this is something positive”.
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