Does Palliative Care Have a Role in Living with Rare Disease?

What comes to mind when you hear “palliative care?” Most people might think it only helps someone with end-of-life care.

But did you know that palliative care can actually lift spirits and improve quality of life for those suffering with rare disease, like CF? Palliative care is a great resource for people with serious, chronic diseases. I think the perception of this service needs to change in order to open more doors to an improved standard of care.

This service can help so many people. Palliative care gives an individual some extra, much-needed support. Although it doesn’t extend life expectancy, it does help with symptom relief and helps to decrease the stress that comes with a rare disease. It is always a great feeling to know you have someone else in your corner.

Palliative care can also provide the emotional and spiritual support that a person may need. When you are faced with a rare disease, it affects all parts of your life. This service can help in those areas. For example, they provide a Chaplin to discuss your spiritual needs, psychologists to provide counseling, access to support groups if needed, dietitians to help with nutritional needs, nurses and doctor to help relieve symptoms, and a social worker to help you gain access to community programs.

Who wouldn’t appreciate some extra help in their corner? Check out more info here.


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