Of the three sisters diagnosed with Porphyria:
- the oldest sister has 6 children all may have the disease
- the middle sister (Rose) has 4 children, none of whom have yet been diagnosed
- the younger of the three diagnosed sisters also has 6 offspring. Only two of these children appear to have the disease.
Other Questions I asked mom:
I asked if symptoms were different for some of her family members and she said that the symptoms were generally the same. However the severity of the itching varied from person to person and appeared on different parts of the body. She said that there is also a general family sensitivity to sunlight and of course the major issue is the allergies to certain medications.
I asked if she could remember to being a young woman before she was diagnosed and if she was sensitive to the sun at the time. The following anecdote reinforces the fact that as a young woman mom was not sensitive to the sun even though her younger sister had a different experience. Mom said that her younger sister had from a very young age hated being in the sun saying it always made her feel sick. Rose could not remember as a child or a young girl feeling sick from the sun, however, she loved to suntan and show off lovely tanned legs. Mom explained that she was unable to compete with other girls who could afford to buy 'the breakthrough of the century" new nylon stockings and so suntanned legs were the next best thing.
I asked if she had tried any medications on her skin. She replied that she had tried everything on the market that she could afford. That she had spent large sums of money (money she could ill afford) on different creams however none of these ever helped.
I asked if she now took anything for the pain and she said that the only thing she could take is Paracetamol which has no side effects for her. However she stated that this was not strong enough for the very severe pain she sometimes experienced. At the moment she finds some relief in a generic form of Paracetamol which is slightly cheaper.