Porphyria Educational Services
Porphyria Educational Services Bulletin Vol. 2 No. 36 September
10, 2000
FOCUS: The Importance of Having a Family Medical History
Family medical history is important when trying to
obtain a diagnosis of porphyria. Moreover it is important in
looking at the various symptomology of other family members with
the same disease. Knowing other family members and what they have
gone through, how the disease presents within them, and their
coping strategies is most important.
So how does one go about this task?
First of all you must inquire about the health of each family
member through second degree relatives. This will include your
grandparents and even your first cousins.
You will need to pay special attention to any signs or symptoms
related to your condition which can be found in relatives.
Always inquire about causes of any deaths, including any
stillbirths or early deaths, institutionalizations.
Try to obtain both medical and death records of relatives as
well. Also be sure to inquire about any possible consanguinity.
Although often unpleasant, it is important to recognize that
false paternity does occur.
Chart all of the porphyria symptomology. Make photocopies of your
findings along with the medical charting and death notices.
Fix a porphyria binder with all family charting divided into one
section.
In another section chart all of your own allergic reactions,
triggers, contraindicated drugs, chemical toxins and foods.
Collect every tidbit related to your health and porphyria
symptomology
Carol Sherman, RN, MNS