TFRD knows that physical condition of rare disease patients can be treated and controlled by clinical examination, but their emotional condition is usually harder to perceive, especially since they lack the social interaction that ordinary people are accustomed to. When caring for rare disease patients, we have to pay attention to not only their physical ailments, but more importantly, the psychological journey that they're experiencing. Starting from pre diagnosis until after their discovery of their situation, they start feeling anxiety leading to fear, depression, and lastly anger. It is obviously clear that we should spend more time and energy helping them cope with and understand what they are going through, so they can better deal with these negative thoughts and feelings.
Let us not forget the other people that are involved in this scenario; the caregiver/family of the rare disease patient. Caregivers often experience great difficulty coping with the burden yet they feel they have a moral and ethical responsibility to just simply walk away. Their needs are often ignored and we forget that they require just as much attention as the patient.
Starting 2003, we have been conducting a series of psychological support activities. Through these growth groups, we hope to help patients open their hearts and minds and share with each other their experiences and feelings. In this manner, not only can we help patients develop the ability to solve problems, patients also realize that they are capable of helping and encouraging others.
In 2006, in cooperation with professional psychology institutions, TFRD start providing psychological counseling to patients who feel like talking to the contracted counseling psychologist and seek help to overcome life predicaments. Since then, 34 patients and their families have received regular counseling services.
Furthermore, TFRD sets up a help-line that well-trained volunteer workers make regular phone visits to patients who cannot go out. In 2008, volunteer workers have called regularly to 4 patients and 3 patient's family members.
|
