Rare Disease

Latheesha suffers from Osteogenesis Imperfecta (OI), also known as brittle bone disease. A rare genetic disorder, OI mainly affects bones making them brittle and prone to easy breakage.

What’s also important to note is that these rare diseases are country specific. For instance, malaria is not considered a rare disease in India, but it is one in the USA.

To say that they were going through hell while trying to find help in different parts of the world would be putting mildly.

As India’s population grows, its need for adequate pharmaceutical and medical infrastructure is also going to burgeon. In such a scenario, it is important to give equal attention to research into rare diseases and their cures. Dr. Namitha Kumar takes a closer look at India’s research progress in this field, and what still needs to be done going forward.

Being diagnosed with a rare disease at birth can be difficult to come to terms with, especially when the treatment leaves permanent side effects. However, 25-year-old Shivangi has refused to let her experience with Meningocele shape her life, choosing to overcome her challenges through grit and determination.