Undiagnosed Disease

An undiagnosed disease means that the medical community cannot assign the symptoms to one particular disease biology, or give it a clear prognosis. Frequently these conditions present a complex set of symptoms and it is difficult to find an underlying diagnosis, because fewer than 200,00 people in the United States are known to be affected. In these cases, a body of knowledge necessary to treat the condition does not yet exist. More than 25 million Americans and their families are part of this group. Many are asked to participate in research studies focused on understanding their condition.

How Palliative Care can Help

Pediatric palliative care is all of the specialized care not directed at treating the disease itself. Depending on the patient, it might include consultations with a child life specialist, social worker, nurse and/or nurse practitioner, music therapist, massage therapist, occupational therapist, etc. In short, palliative care is designed to provide relief from the symptoms, pain, and psychological and emotional stress of serious illness-whatever the diagnosis. The goals are to promote quality of life for the child, and to ensure that families are active in the child’s treatment, so that medical decisions are patient- and family-focused.

Palliative care is often confused with hospice and end-of-life care. It is intended for children and families living with a life-threatening or terminal condition, but pediatric palliative care is NOT hospice. In fact, palliative care is appropriate for any stage of the illness and can be delivered along with disease directed curative treatments.

Palliative care providers recommend that treatment begin as early as possible in the illness journey. Integrative care that includes palliative medicine can begin at diagnosis.

Ask your pediatrician to recommend a palliative care provider. You may also visit the Center to Advance Palliative Care (CAPC) website, which includes a directory of palliative care providers and hospitals by state.