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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