post news network, Bhuabneswar, May 30: Nineff D’Ambrosio hails from the US and works for Boeing in Seattle, but she often pays a visit to India and travels to different parts of the country, including Orissa, to make sure several women suffering from a certain kind of bleeding disorder are made aware about the menace and the ways to tackle it.
The journey for the mother of two daughters started when she discovered that her two stepdaughters were suffering from a severe and rare bleeding disorder called Factor V deficiency. “I have two stepdaughters who are adults now. They were suffering from a rare bleeding disorder, which affects one in millions. Small cuts and minor accidents used to create life threatening cases for them. … Later I decided to make it a mission to help others, who are facing the same,” Nineff told Orissa POST through email.
Nineff has also written a book called ‘Pooling Blood’, based on her struggle to keep her daughters away from the dangers and the prolonged care needed by the families of those who faced these problems. Later she tried other means to reach out to a number of people across the globe; her special focus on India is because of the lack of awareness about the disease among the people of the country.
“In developing countries like India … 75-80% of the bleeders are not identified. It is up to the family members to become educated, to network with others and to advocate for the family members who are suffering. It is of paramount importance to identify the people who are facing bleeding problems, but not diagnosed,” she said.
Nineff, soon after writing her book on bleeding disorders, decided to make a network of people who are facing similar kinds of problems. “With the advent of Facebook, I started a nonprofit organisation that was also a social network called ‘MyGirlsBlood’ where I simply asked ‘Where are the girls in the world who have bleeding disorders?’ Later I received many responses to this and I came to know there are many who are facing it,” she said.
Nineff visited Orissa last year during August and tried to meet many people suffering from bleeding disorders. “I visited Puri during August 23-24 for a workshop by Haemophillia Federation (India) Women’s Group. Awareness among people towards the disease in the state is also very low and I am just trying my bid to help them in getting it. I look forward to visiting Orissa and other states to ensure I make some contribution too,” she said.
