Rare diseases are very complex and chronic in nature, which causes a lot of struggle for children with these diseases. Some of them have to face a delayed diagnosis, which puts them in a state of frustration, pain, and isolation. When these diseases are existent in babies and children, it has a lasting impact on their physical and mental health.
It is beyond doubt that children with rare diseases have feelings of isolation and hopelessness. Rare diseases contribute to mental health issues and reduced quality of life in children. While the state of their health deteriorates, some children have to drop out of school. This makes them have to manage their own care and form patient organizations for support.
Many families of patients with rare diseases suffer so much because there is a sense of having to handle it all by themselves. They go through pain to explain themselves to other people in the community because those people don’t understand. Having to live with someone with a rare disease puts many families in several financial debts.
These family members have to joggle trying to keep their jobs, homes, and other parts of their lives while providing care and needed services to fight the diseases. They deal with not just the emotional stress that comes with caring for a sick child but also with financial stress.
Most times, rare diseases are so uncommon that there is very little or no information at all on them. This place the burden of finding resources and understanding them on the family members.
Many parents of children whose disease caused them to have an early delivery face week or even months of having their child looked after in Neonatal Intensive Care Units. This can be a terrifying and challenging time for the parents, and they end up being anxious.
Parents of patients have to internalize the guilt that comes with having a child with rare diseases. They also have to allow themselves to accept their child’s loss. It could be a loss of function, loss of how they considered their child would be, and some desires they had that may not be achieved.
According to research, rare diseases are not so rare. About 300 million people live with one or more of over 7,000 identified rare diseases all over the world. While the diseases themselves may be rare, figures show how many people that have to live with diseases that get little or no attention.
Most countries do not track rare diseases, and it should not be so. Many do not even document them after diagnosis. These diseases are even called orphan diseases because drug companies tend to neglect them by excluding them from drug research and development.
People with rare diseases have the right to equitable access to health and support services. They also deserve accurate diagnoses and adequate treatments. Awareness should be raised for rare diseases to enhance support from people around them.