Earlier this year, I wrote about the efforts of the Progeria Research Foundation to offer new hope to children affected by the rare disease progeria, by boosting access to the drug lonafarnib. To better understand the lives of those affected progeria and the work of the Progeria Research Foundation, I interviewed Audrey Gordon, President and […]
genetic disease
Progeria: New hope in India?
There may be a new hope in India for those affected by a condition known as progeria. As reported by ETHealthworld.com, a programme has been launched in India to enable those affected to access the drug lonafarnib. As explained in a Pharmaceutical Technology article, “lonafarnib was initially studied as a potential cancer therapy, but later […]
Down syndrome in India: A reflection
More than 30,000 people are born with Down syndrome in India every year – many of whom must grapple with social stigma and discrimination. Today marks World Down syndrome Day, an opportunity to address this prejudice head-on. As previously reported by Health Issues India, “individuals with Down syndrome often face discrimination in India, with common […]
Haemophiliacs struggle in silence in India
Yesterday marked World Haemophilia Day, an opportunity to raise awareness of the condition and its largely hidden footprint in India. For India’s many haemophiliacs, suffering is often in silence. Haemophilia is a genetic condition which means sufferers do not have enough clotting factor. This refers to a group of proteins in the blood which works […]
A father’s fifteen-year fight for a drug for his daughter
After fifteen years, a father has won a legal battle over medical expenses he paid to treat his daughter’s genetic condition. The Gujarat High Court has ruled in favour of Harshadkumar Pandya, an assistant teacher in Rajpipla, whose daughter was born with Silver-Russell syndrome, a form of dwarfism. Fifteen years back, on the advice of […]
Parents fight back against thalassemia benefit cuts
Parents of children affected with thalassemia in Telangana have hit back at a new policy reducing health benefits for families battling the disease. Thalassemia is a genetically inherited blood disorder. With between 10,000 and 12,000 children are born with the disease every year, India is believed to be home to forty million people who l […]
Screening for blood disorders proposed in bill
The Union Health Ministry has created a draft policy that could help to identify hemoglobinopathies, thalassemia and sickle cell disease. With sickle cell anaemia reaching prevalences of up to 35 percent in some communities, such a programme could identify many unaware of their status and who go without treatment as a result. Titled ‘Prevention and […]
A type 1 diabetes epidemic among India’s children?
Around 97,000 children in India suffer from type 1 diabetes. In Delhi alone around 32 children per every 1,000 are affected by the disease. Indians suffer a genetic predisposition to diabetes which partially accounts for the elevated numbers of diabetics in India compared to other nations. A number of genes have been uncovered which could […]
Genetic diseases: Court rules against insurance companies
People with genetic conditions have routinely been excluded from health insurance policies in India. With the law now falling on their side, at least in Delhi, could the situation of those suffering with genetic diseases improve? The Delhi High Court has ruled that a currently used clause that allowed insurance companies to deny an individual […]
Gujarat: Leading the fight against thalassemia
Gujarat is expanding a number of prevention policies with the aim of making the state thalassemia free. Foremost among the proposed policies is the intention to make thalassemia testing mandatory for everyone, with a focus on testing women before they give birth. India is considered to be the world’s capital for thalassemia cases, with 10,000 […]