Patient Home Care

Home care for patients and their families is very important. In order to offer support to someone with a chronic illness one must first understand the condition and the impact this has on the person in their daily life. 

Often times a Porphyric will go through stages where the condition is well managed and under control only to have it triggered after months or years resulting in chronic illness.

Family members who dont have the condition equally require support, not only will they need to understand the condition they will have to learn to be aware of triggers that set off an attack and at the same time they may struggle with their own issues on how to deal with this.

When someone is diagnosed with Porphyria the importance of counselling therapy for the patient and family is often overlooked, especially when someone has had a severe attack and may require long term rehabilitation. This can be a traumatic time for the family as well, meeting with a therapist to help the patient and the family can go along way to helping them come to terms with the situation.

 

In this section you will find useful information based on patient experience, providing deeper insight for family and friends which we hope will go a long way towards understanding the different nuances this disease presents.

 

Dealing with an Acute Attack

For Family and Friends

From a Caregivers Perspective

The 12 Lessons of Porphyria