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

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