HERPES SIMPLEX AND SHINGLES
Herpes Viruses Association
Who are we?
We were set up by patients who wanted to supply accurate
information on herpes simplex virus to public, media and
health professionals so as to counteract the effect of scaremongering
stories in newspapers and magazines. We have now also formed
the Shingles Support Society for helpling people with shingles
pain - see below.
What do we do?
- We run a helpline manned by trained volunteers with
herpes simplex offer information and empathy. Some volunteers
are women who have had babies since acquiring simplex
- which is something that worries many women unnecessarily.
- People can also attend counselling, workshops or seminars
held in our London office.
- Members receive a quarterly journal, also leaflets
on all aspects of the virus. A local contact network for
members is established across the country.
- Our 6,000 word 16 page booklet ‘HERPES SIMPLEX-
A GUIDE” is distributed through Departments of Genito-urinary
Medicine nationally.
- Send SAE for full details of services and a publications
list.
The Shingles Support Society
We have advice on self-help for post-herpetic neuralgia
which can follow shingles, also six pages written by a consultant
neurologist for GPs regarding drug treatment with dosage
information.
Shingles is a recurrence of chickenpox. This viral infection
causes soreness or even pain and a patch or spots usually
on the side or head. Anyone who has had chickenpox may develop
shingles and it will get better without treatment. But in
people over 60, the chances of developing post-herpetic
neuralgia following shingles becomes sufficiently probable
to make preventative treatment advisable. Post-herpetic
neuralgiacan be very severe: “It can be one of the
most intense, and if untreated, persistent pains known -
and may render the patient’s final years an unendurable
misery” reports Dr David Bowsher, MA, PhD, MRCPed,
FRCPath.
Various drugs have a pain-blocking effect These include
gabapentin, old fashioned trieyclic antidepressants and
a chilli pepper cream. Self help suggestions include transcutaneous
electric nerve stimulation, firm bandaging, wrapping with
cling film or applying Opsite - and more.
Send SAE with small donation to cover photocopying costs
for a 19 page information pack with self-help and drug treatments,
and a list of people who would like contact with other sufferers.
How do we help doctors?
TIME
Time constraints may mean that doctors are not in a position
to encourage discussion. In a study of consultation of 30
patients with a history of simplex, the assessment showed
that the doctor initiated a discussion of simplex in only
6 cases, the patient initiated discussion in 11 cases and
yet doctors felt that the daily lives of 76% of these patients
were affected by simplex’. Volunteers offer as much
time as the patient requires to talk through their worries,
to get understanding about their condition. The HVA helpline
is available every weekday for 2 to 4 hour sessions, dealing
with an average of 8.5 callers for an average of 13.5 mins
in each.
“I spoke to a lady from Leeds for 80 minutes. She
was crying when she called me. By the time we said goodbye,
she was cracking jokes.”
A helpliner’s report
PERSONAL EXPERIENCE
GPs will see only 2.4 cases per year and may be surprised
by the patient’s adverse reaction to what is, in most
cases, a self-limiting benign condition. We can explain
how viral latency and reactivation occur. The HVA can supply
self-help tips and other advice about alleviating frequent
recurrences through stress management, diet, etc. and go
through the list of trigger factors that may be precipitating
the symptoms.
We do not limit our suggestions to antiviral therapy, which
is expensive. We suggest symptomatic relief including topical
anaesthetics or anti-inflammatory agents. The former include
lidocaine (Xylocaine gel 2% or ointment 5%) which may also
shorten recurrences2 or well-wrapped crushed ice in a plastic
bag. Anti-inflammatory agents which can be suggested are
salt water washes or cold used tea-bags. Some people wish
to try herbal remedies, others only have faith in prescribed
medications. We are particularly interested in sharing information
about complementary or self-help treatments that our members
have found helpful. We do not endorse any particular product.
“Not only have my outbreaks practically ceased,
but also I had far fewer colds last winter.”
Letter from a subscriber who is
taking eleutheroccocus senticosus.
FACTS
Healthcare professionals may have given the relevant information
at a time when the patient was unable to
absorb it. Patients may need to ask the same question many
times over before fully grasping the answer.
Some questions are considered too trivial to “bother”
the healthcare professional with.
“It took four repetitions, using slightly different
words each time, before the caller grasped the message “you
will not reinfect the person from whom you contracted it.”
She was worrying about how to prevent her boyfriend from
contracting the infection.” A helpliner’s report
EXPERIENCED COUNSELLING
Counselling and education are paramount in the management
of those infected with HSV3. Particularly when a condition
bears a stigma patients appreciate talking to someone who
has had a similar experience who will therefore be non-judgemental.
As a long-standing patient support group, our charity has
experience of the whole range of questions, reactions and
emotions that the word ‘herpes’ may evoke. Medical
professionals may choose unfortunate words to explain the
nature of herpes simplex, e.g. the word ‘incurable’
is frequently thought to mean flat at.
“How long have I got to live?” is asked in letters
to our office
ANONYMITY
Herpes simplex is an especially stigmatised condition and
therefore the anonymity of telephone counselling is valued.
“I can’t tell my GP I’m sleeping with
another man as well as my husband, but I need to know
from which one I could have caught it and how to protect
the other”
A sixty two year old caller to
our helpline
Why it is important that patients should be aware
that we exist?
"Patients with genital herpes suffer considerable
psychological morbidity and the fact that they are able
to receive very sophisticated and experienced counselling
and meet other patients with the same condition has been
extremely useful in helping them to deal with their condition.
The HVA has fulfilled this role admirably over the years...”
Professor M W Adler, MD FRCP FFPHM, UCL
Medical School, London, 1997
1) Cassidy LC, Holder MA, Barton SE, Meadows J, Catalan
1. GUMedicine. Oct. 94:315
2) Cassuto J, Lancet, 14-1-89,
3) Woolley P. J3Journ Sexual Med. 1996. 23/1:27
Herpes Viruses Association
Any one can ask questions, get facts and advice from:
020 7609 9061 - the helpline of the Herpes Viruses Association,
a registered charity.
Or send an SAE to:
HVA
41 North Road
London
N7 9DP
For Further information visit the website
www.herpes.org.uk
