|
continued
from previous page....
I wrote to
magazines
and doctors' columns and
visited my local library to find out if there was any
information about my illness or a charity or group for
sufferers of Addison's disease, only to find out that there
was nothing at all.
It was
suggested to me that I start a self-help group and after
much deliberation on my part and encouragement from my
family and friends I did just that, founding the Addison's
disease Self Help Group {ADSHG} in July 1984. Now I have 648
group members, 494 females and 154 males, and over the years
I have learnt so much about Addison's disease from having
the illness myself and from listening to the experiences of
my group members.
Those of us
who were not diagnosed until we were really ill would like
the medical world to be much more aware of Addison's disease
and it's symptoms. While we think we suffered unnecessarily
we do realize how difficult it must be for doctors, who only
have a few vague symptoms to go by at the onset of the
illness, plus the fact that a great number of doctors have
never seen a case of Addison's disease before.
Living with
Addison's disease for me is not a problem. I have had two
crisis but apart from them I am very well. I see my
specialist every 6 months and have had a day curve test and
a bone density scan quite recently.
I wear a
MedicAlert emblem and carry my steroid card at all times. I
have an emergency hydrocortisone pack at home and have been
told to double up on my steroids in cases of infection or
fever. I have been asked if there is really anything wrong
with me because I always look so healthy, and I have more
energy than some of my friends. I do find, though, along
with many others, that mental stress affects me so much more
now than prior to diagnoses.
It is always
hard for the parents of children with Addison's not to be
too overprotective; they must learn along with the child all
about the illness and how to cope with it as they grow up.
Not all
Addison patients are as lucky as myself-some have never had
a day curve test and rarely see a specialist. However, since
joining ADSHG many have told me how they have now had these
tests and have had their medication adjusted accordingly;
also they say how helpful it is to be able to talk to or
even meet someone else with Addison's disease, because it is
a rare illness. Some people had never spoken to a fellow
sufferer until they joined ADSHG.
We are told
that if we are replaced correctly with hydrocortisone there
should be no side effects from the illness or drugs but some
in my group have osteoporosis and lots have weight-gain
problems; some experience mood swings and periods of extreme
tiredness.
Diabetes or
thyroid problems have developed in some patients since being
diagnosed with Addison's disease and it has been difficult
for some to achieve the right balance of their different
medications.
In an ideal
world all Addison's patients would be monitored regularly by
their local hospitals and all hospitals would issue an
emergency hydrocortisone pack {and teach patients and their
families how to use them}.
Through my
group I help fellow sufferers by listening to their problems
and worries, especially if they are newly diagnosed, and
give them advice gained through 16 years experiences of
running the group. I am not medically qualified in any way,
so my advice Is from a patient's point of view only. I also
put group members in touch with each other and many
friendships have been made within the group. I run the only
group for Addison's sufferers in Great Britain and Ireland.
Re-printed with permission of the publishers from:
Comprehensive
Clinical Endocrinology including CD-ROM 3e
G Michael Besser,
Professor of Medicine,
Departments of Medicine and Endocrinology, St Bartholomew's
and the Royal London School of Medicine and Dentistry,
London, UK,
Michael O. Thorner
, Henry B. Mulholland
Professor and Chair, Department of Medicine, University of
Virginia Health System, Charlottesville, USA
ISBN 072343185X · Hardback · 760 Pages
· 1060 Illustrations
Mosby · Published June 2002
Read more...
Price: £ 125.00 |
About us
ADSHG
Website Alert