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Being A Caregiver with Porphyria

Being A Caregiver~ Part 1

What does a caregiver do?

The caregiver is part of the health care team, which also includes the patient and the medical staff.

Caregivers do many things:

  • Help feed, dress, and bathe the patient.
  • Make sure the patient eats and gets rest.
  • See that the patient takes medicines as they were told to.
  • Keep tracts of appointments.
  • Take care of insurance problems.
  • Drive the patient
  • Help with other family member's needs.
  • Talk to the health care team about how the patient is doing.
  • Help the patient live a normal a life as possible.

How to be a good caregiver:
A good caregiver is often the one person who knows everything's that's going on with the patient. Don't be afraid to ask questions and take notes during Doctors visits.  Learn who the members of the health care team are and know how to contact them.

Let the person that has Porphyria make decisions.  If the patient is making poor choices, talk to them about their choices.  Then talk it over with the health care team and get their help. (Things like not taking medicines or not following the doctor's orders, may be poor choices that should not be ignored.)

If you would like more information such as a Patient Kit or a Comprehensive Dr. Kit to be sent out, please contact the APF @ 1-866-APF-3635

Part 2 on Caregiver's help and text will be the next article:

                                 "Remember....Research is the key to your cure!"


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