Porphyria Educational Services

PORPHYRIA EDUCATIONAL SERVICES BULLETIN
Vol. 1 No. 39                                 September 22, 1999
FOCUS:   The Question of Triggers in Porphyria


            While chemical do indeed play a large part in the truggering
acute attacks of porphyria in today's modern environmentally unsafe
world.  Chemical toxins do play a role as we so well know.

            However, porphyria as a disease on it's own was around long
before chemicals played a roll in the increase of the disease.

            And the increase of the disease itself may be questioned.
Advances in molecular biological permit identification of porphyria
patients and latent carriers with in families today.  Just a few years
back this was all impossible.  DNA  today has a very definite impact
on being able to add numbers of people to the porphyria population.

            Other factors in a growing porphyria population include the
general rules of misdiagnosis, underdiagnosis and lack of any
diagnosis among the early day porphyria patients.  All too often
the misdiagnosis ended with a diagnosis of mental illness and so
the real diagnosis was left unmade.

            On the other hand, it is simple mathematics to know that the
porphyria population willl double each generation, that being on the
average of every 20 years, a doubled population of porphyrics.

            There are many other factors besides chemicals which can cause
a person to have active porphyria.  For women, hormones are a great
factor and always have been a major factor.  Poor diet is another factor.
During the years of the media pushing for everyone to be "thin" many
new porphyrics experienced their first acute attacks after having
undertaken reducing diets or fasting.   Having other medical problems
such as  basic infections can also trigger porphyria as the infecgtion
generally overall weakens a person.

            But back today's world we must seriously look at the chemical
toxins that surround us.  We must do this despite differences of openion
among the top porphyria researchers.  Porphyrinogenic substances
do increase porphyrins and set people up for acute attacks.


          The well known MCS writer, Cynthia WIlson who has spent her
life in research and writing on our toxic world, found in her research
that there are 3,700 toxins that are directly linked to porphyria.  As
porphyria patients, and including families of porphyrics, we must learn
to limit the use of such substances, and avoid the majority of them
in our environment in order to avoid acute attacks.

           Some porphyria patients have gone so far to have the Antibody
Assay Laboratory [AAL] series of tests for antibiodies run to determine
antibodies for formaldehyde, trimellitic anhydride, dilsocyanates.  The IgM
antibodies purportedly show recent exposure to such.  The IgE show classic
allergy responses.

            Pophyria and its triggers are many and so varied and most will not
be fully realized in our lifetime, as porphyria research is not a priority
area of scientific or medical research.  So as individual porphyrics we must
keep on reading, educating, and analyzing what we eat, drink,  breathe and
bathe in, as well as what we wear, and the materials in which we decorate
our homes, from carpeting and drapes to the laundry soaps in which we
wash our clothing.