Porphyria Educational Services
A letter from the CEO
Diana Deats-O'Reilly CEO
With the advent of the Millenium, Porphyria Educational Services has continued to grow
and has many new friends. Continued generosity on the part of many has enabled PES to
accomplish many services and programs.
The publication of the book, "Porphyria" The Unknown Disease" first released in 1999
continues in popular demand by both patients and physicians alike.
Requests for the book continue on a regular basis.
We especially thank the medical community for their continued fine support of the book
and for referring to the book to their patients.
Weekly Bulletins produced by PES continue to climb in wekkly readership.
The weekly PES Bulletin has been very successful. PES now has several
specialists from the various medical services contributing to these publications.
The Unsafe Drug data base is the most used of the webpages. PES has been
most fortunate with the full cooperation of six various data gathering services
regularly sending PES updated reports on various drugs and their contraindications and
their cytochrome P450 action. From this PES has been able to combine all of the
lists and included both the Generic as well as the Brand name of drugs, and
our webmaster has able to include an instant access feature allowing to type
in a name and have an instant access to that particular drug, if it should be
"unsafe". We have received more compliments on this service over the past year
and PES has been most happy to provide this service to patients, pharmacists and
During the Millenium year the PES Traveling Educational Booth traveled far
and wide across the United States. There has been an increased awareness of the porphyrias
within the growing medical community. Several medical schools have made contact
with PES and requested materials or use of the Educational Booth.
The Traveling Educational Booth has found it's way to medical conferences,
nursing education conferences, a pharmaceutical workshop, as well as
to several hospitals and various medical conventions. The booth which was well
received in 1998 during its debute, the booth is now in demand throughout the year along
a table for distributing of the porphyria handbook.
PES has come to realize fully that physicians do want to know anout porphyria.
Physicians do take the time at conventions and workshop to visit the booth.
During the millenium the over 10,000 pieces of porphyria literature was distributed.
at medical conventions, hospitals and by direct requests.
We have valued the number of physicians who have helped with the ever
growing number of medical information requests. We try our best to link
patients with physicians who can best answer their specific porphyria needs.
During the Millenium it has been a a growing number of pharmacists has
contacted PES and have complimented us on the Unsafe Drug website which
more are increasingly uses in their pharmaceutical service
Again, on a personal note, Porphyria as a disease, has become manageable.
Preventive therapy, keeping an ever watchful eye for triggers, and avoiding such
triggers spells "porph free" days and a wonderful quality of life.
I wish that my success will be your success in the year ahead. I feel that it is
"high time" that all of us get answers and the medical care that we need.
A cure does not seem anywhere in the near future, and realistically
not in my lifetime,given my age, but decent medical care with knowledgeable
attending physicians is possible and should be attainable for all. I am most
fortunate and count my blessings because of the wonderful and knowledgeable
primary medical caregiver I have!
All gray clouds they say, have a silver lining! With porphyria being the "gray
cloud", my silver lining is the beautiful people that I have met through
porphyria. In sharing we each come to realize that we all have the same basic
needs, desires, and the need for affirmation especially during the low points
with porphyria. It is through these times I have been richly blessed by you,
and I want you to know how much that really means to me. And to all medical
care providers working with porphyria patients, we thank you a thousand times
over for dealing with a complex and misunderstood disease.
Porphyria patients all know too well that trying to diagnose any porphyria is like
trying to find a needle in a haystack. But you have and you will continue to do
so as a commited medical professional.
As porphyria patients, we know that you as primary care providers have
patients with the more traditional diseases, and so we understand why you are
sometimes perplexed with us.
I' m wishing each of you the best for each day of the year ahead. Whether
porphyric or care giver, or medical care provider, you deserve the best!
May the year 2001 be a positive, healthy and a time of growing understanding
of the disease, Porphyria......and all of it's complexities.
During 2000 Ninety-seven percent of all monies received by the Porphyrin Press
and Porphyria Educational Services was used totally for providing porphyria
educational materials to porphyria patients, their families and medical care
providers. Not one penny was spent for fund raising. Generosity by friends of
PES has been most appreciated!
Porphyrin Press and Porphyria Educational Services do not undertake
any soliticitations by phone, email, advertising, internet, door-to-door, or
by mail. All fundings comes from the generosity of friends of the porphyria
community and the medical community through their direct contact with PES.
Due to concerns of a porphyric, a license for "Soliticitation" was secured, but
no soliticiation will be made. It has been the philosophy that you provide a
good service and the recipient is happy, generosity will flow forth, and it has.
For this we are most grateful!
Diana Deats-O'Reilly AIP/PCT
Porphyria: The Unknown Disease