My name is Nguyen Ha Linh. I’ve lived with multiple sclerosis for 14 years. This disease is not congenital, so until age 23, I lived normally as a graphic designer in Vietnam. My early symptoms included weakening of my arms and legs until I gradually became paralyzed. I developed atrophy of the nerve in my eyes, so I can’t see anything. Moreover, I’ve had challenges in accessing medical examination and treatment services because only one public hospital in Vietnam has a treatment regimen for my disease. At first, I was very confused and desperate, but now I’ve stabilized my mind and accepted the situation.

Currently, my condition is in the final stage. I can only lie in bed, unable to sit in a wheelchair. It is hard to breathe, so I need to use oxygen. All my activities depend on the care of my relatives. The challenges I face include lack of access to treatment (because my condition is a rare disease) and financial burden (expenses for this illness are higher than my income). Unfortunately, multiple sclerosis is not covered by insurance in Vietnam, so I must pay for my care out of pocket, with financial support from my relatives.

Multiple sclerosis is considered a rare disease in Vietnam. People living with this condition find it very difficult to access diagnosis and care, and not all major hospitals have the resources for treatment. For those that manage to access care for multiple sclerosis, this is very expensive, and is not covered by the national health insurance in Vietnam. Therefore, people living with multiple sclerosis who face financial challenges often focus on advocating for funding from philanthropists who care about the cause of people who are living with a disability.

In Vietnam, the national fund for health care primarily allocates support towards medical treatment. However, many challenges related to treatment, care and support for people living with NCDs remain largely unaddressed. In particular, the components of care and support are weak, which therefore means that relatives play an important role for those who have a good support system at home, which is not always the case. People living with NCDs would like to call on the government to change the regulations around health insurance to allow access to affordable diagnostics and care to help us have a better life.

I hope that organizations and communities, in Vietnam and globally, increase support for people living with NCDs, including multiple sclerosis. Moreover, I hope for improved access to treatment, care and support. I call on the Vietnamese government to give economic support packages to people living with NCDs, especially people with disabilities, because many are paralyzed, unable to support themselves and earn a living.

Through sharing my experience, I hope to reveal a practical view of this condition in Vietnam and help more people living with multiple sclerosis to gain confidence, stability and to receive the care they need.