Publicity/Public Awareness
In this section of our blog we post articles from national newspapers, magazines, journals, and from the web in general. If you would like to comment on these articles, please feel free to do so. Equally, if you spot something that you would like us to include, please contact us.
NB. We reserve the right to remove any comments and not to publish material that we feel is off-topic, or would be misleading or offensive to our readers.
Public awareness plays a vital part in avoiding tick-borne disease but unfortunately, as so often is the case with medical issues, it has fallen to a group of patients to bring the topic to the attention of government officials, the media, and the general public. It is also often the case that only when public awareness in increased does the true picture reveal itself. Through our experience in receiving letters from members of the public, in talking to them at events, and through the responses to our surveys, it has become obvious that the recorded statistics for the incidence of tick-borne disease in the UK is just the tip of the iceberg.
Finally the government is issuing warnings to people involved in outdoor pursuits, and various reports now highlight tick-borne disease as an increasing threat. However, it is still very apparent that a large section of the general public still knows little or nothing about ticks or the diseases they carry. Of those that are aware, many still use unsafe methods of tick removal, such as smothering the tick with butter, alcohol or petroleum jelly, or burning it with a cigarette. So much more needs to be done not only to educate, but to re-educate as science progresses.
Whilst it is very encouraging to see the subject of tick-borne disease highlighted by the government, what isn’t discussed enough is the occurrence of urban-acquired tick-borne infections. Far greater recognition by governmental departments is required to teach healthcare practitioners that such cases do occur and not to dismiss the possibility because the patient hasn’t been to the New Forest or abroad!
In one message that we received, Alex writes:
“I was infected after being bitten on my legs whilst cutting down long grass in my girlfriend’s back garden on a housing estate in Birmingham. I was wearing shorts and no socks at the time. I never saw what it was that had bitten me. Two weeks later I developed two typical ‘bull’s eye’ rashes. I only knew what they were because of information I had read on the BADA-UK website.
Don’t let anyone tell you that just because you live in an inner city you’re not at risk!”
Thankfully, because Alex was able to recognise his symptoms, he went on to receive treatment.
Children are at an increased risk because they not only play in the outdoors but with it. Making sure that their time outside is enjoyable and exciting, without any repercussions, is so important. Keeping them safe isn’t difficult. Making sure that they are dressed appropriately and using insect repellents will significantly reduce the risk of them being bitten. Checking them over for any attached ticks could also make the difference between them getting ill or not and it is important to know where to look and how to recognise tiny ticks.
Equally, pet owners need to be aware that not only could they be unfortunate enough to contract an infection, so could their pets. Keep pets tick free; it could save their life!
It is very important that people keep things in perspective and don’t become afraid of the great outdoors. After all, there are countless threats to our wellbeing every time we step out of the front door. However, whilst there is no need to panic, to understand that ticks can be present in all kinds of situations, that they carry infections, and that there are ways to avoid contracting these infections, could ultimately prevent you from a life-long debilitating condition.
We hope that whatever awareness we raise through our website, national awareness week, exhibits, and this blog, will continue to filter out into the community. We need help for this to happen. You can really make a difference by telling friends, family and colleagues about what you’ve learnt from this website. The “Get Involved” section of the BADA-UK website provides lots of ideas about how to raise awareness in your local community and other ways in which you can help.
And just to give you a flavour of the sort of publicity that has been secured to date
http://lymeblog.com/modules.php?name=News&…article&sid=157
http://www.sunderlandtoday.co.uk/ViewArtic…ticleID=1096681
http://www.thewestmorlandgazette.co.uk/lei…yme_disease.php
http://www.westpress.co.uk/displayNode.jsp…e=sidebarsearch
http://news.bbc.co.uk/1/hi/england/somerse…set/4196368.stm
http://www.timesonline.co.uk/article/0,,81…1723326,00.html
http://bmj.bmjjournals.com/cgi/content/ful…ourcetype=1&eaf
http://www.itvregions.com/West/News/Tick+warning.htm
Spot the number of differing facts as reported by various newspaper publications.
Comment by Craig — November 5, 2005 @ 6:00 pm
Another one.
Archer paralysed by tick bite.
http://news.bbc.co.uk/1/hi/england/norfolk/4456018.stm
For archery champion Mel Clarke it appeared to be a case of just holding her nerve to achieve her goal.
When she arrived at the World Archery Championships in America in 2003, she was ranked second nationally at the sport and was one of the competition favourites.
Yet soon after the tournament began, the 23-year-old from Taverham, Norfolk, was no longer involved in a battle to win a medal - she was fighting for her life.
She explains: “One moment I was firing arrows really well… then within about 20 minutes I was unconscious.”
Doctors feared she only had 24 hours to live as she lay connected to a life support machine, unable to breathe by herself.
Mel, who had prided herself on her physical and mental fitness, was now close to death.
And the trigger for this catastrophic turn of events? A bite from a tick.
Doctors believe the tiny insect had infected Mel with Lyme Disease, a potentially fatal bug which can also lead to arthritis, heart and nerve problems.
The disease is caused by a bacterium which is transmitted to humans by ticks that live on some animals.
But, with a show of determination and bravery honed in top-level competition, Mel has overcome the odds - and won a gold medal in the World Disabled Archery Championships in Italy this year.
In 2003, she had travelled to Poland, France and Turkey for archery championships.
But while on tour in New York that July, Mel said she quickly went from firing arrows to losing consciousness.
Mel recalls: “I suddenly got a pain in my chest and my right side, my heart started beating quickly.
“My coach pulled me out of the sun because it was really hot and that’s all I can remember until I woke up in hospital a couple of weeks later.”
Mel was unconscious in hospital for about two weeks. She awoke to find she could not do anything for herself.
“I was shocked that I was there… I was on a ventilator, I couldn’t breathe for myself and I was being tube fed.
“It was so unexpected… I was well beforehand.
“They (doctors) said I’d never fire another arrow, I was really gutted because I’d gone out there shooting really really well.”
But Mel, who took up archery when she was 16, vowed that she would find a way to fight back.
When it was time for Mel to return home, she was told by doctors that she had Lyme Disease.
And while she won her fight to survive, the infection has exacted a terrible price.
The disease has left Mel paralysed from the waist down and blind in one eye.
The disabilities come on top of an earlier arthritic condition called reflex sympathetic dystrophy, which has meant Mel used a wheelchair and crutches since she was 11.
Training for Beijing
When Mel felt well enough, she set herself a new challenge, to compete in the World Disabled Archery Championships in 2005.
But the terrifying memory of that fateful day in 2003 when she was taken ill at her last world championship still haunted her.
In September, she flew the flag for the British team and won a gold medal.
“It’s been a two-year battle but I think it’s made me stronger. Of course there are days when nothing seems to go right, but everyone has those don’t they?” she said.
Mel holds 10 national able-bodied records and six International Paralympic World records.
She is now training for the Beijing Paralympics in 2008.
Comment by AndyCap — November 28, 2005 @ 8:50 pm
Teaching staff in the Norfolk area warned of the dangers of Lyme disease when taking pupils on field trips. See pages 27 and 28 for their double sided A4 information leaflet.
http://www.norfolkesinet.org.uk/FileSystem/upfile/j00015/SchoolsGuidance04.doc#lymediseaseleaflet
Some guidance for head teachers and staff on the control of infection and communicable disease in:-
Primary and secondary schools
(June 2004)
School outings etc:
· Camping - hygiene and food safety aspects
· Lambing - precautions for pregnant women
· Lyme disease - visiting woodlands etc
· Open Farm visits - general
· Open Farm visits - school organised
· Open Farm visits - proprietors
· Travel abroad - general advice
· Weils disease - boating and fishing
Cadrina
Comment by Cadrina — February 8, 2006 @ 7:23 pm
Cadrina’s link to the information for schools is amazing -in that I live on the border with Norfolk and I’d never heard of this type of literature before when the kids had been on school trips. Once there was a warning about the dangers of Weil’s disease, but that was all.
I’m going to e-mail the Headmaster, and ask if this literature can be made known to all the staff at the school
Also, I’ll tell them about the map to be seen at the following link, then they will realise that Lyme in East Anglia is at a high level, not just in Thetford Forest, but even more so around the Broads.
The map is at:
http://www.woodlandforlife.net/wfl-woodbank/documents/chapter_7.pdf
it’s on pages 14 and 15.
Hope the link works.
Comment by Denise — February 8, 2006 @ 8:44 pm
Hartlepool Today News
Heart Breaking Story of a wonderfull lady: Isabella Radestock (God Bless Her)
Help is needed to curb deadly illness ISABELLA Radestock was the life and soul of the party before illness struck.
But in 1998 she contracted Lyme disease after being bitten by an infected tick in trees near Grants Houses, next to Easington Colliery.
It caused irreparable damage to her vital organs and she died three days before Christmas, after a seven-year battle with the mysterious illness.
Now her daughter Gillian Devine has vowed raise awareness about the disease. Gillian said she wanted people to be more aware of a disease which is hard to spot because it can imtitate other conditions.
She also praised health workers who were a massive help to her mother.
The illness left Isabella, who was fondly known as “Beldy”, in constant pain. She was unable to walk around her home, and it wreaked havoc upon her eyesight and digestive system.
In an interview with the Mail before she died, Isabella said: “I’ve lost my back teeth because of it and now my other teeth are turning black. I have vomiting bouts every few days, diarrhoea, night sweats, hallucinations and it feels as if every bone in my body is broken.”
“I’ve got nodules on my hands and some days they turn blue as if rigor mortis has set in. I’m completely poisoned throughout my system.Gillian, of The Spinney in Easington Village, explained how Isabella, a grandmother-of-one, had also suffered from a number of other health problems as well as Lyme disease.
She battled against chronic fatigue syndrome, also known as myalgic encephalomyelitis (ME). Later, the results of tests carried out in America proved positive for Borreliosis (Lymes disease), said Gillian.
By then it was the summer of 2001 and Isabella was admitted to hospital for treatment.
But her health continued to deteriorate and in 2003 she developed pneumonia and then breast cancer, said Gillian.
She added: “They diagnosed her with breast cancer in October and they operated in the November. They gave her a double mastectomy. Then the Lyme disease got worse.”
Isabella had to have a Hickman line inserted into her chest to pump antibiotics straight into her heart to treat the Lyme disease, said Gillian.
And at the same time she was undergoing chemotherapy and radiotherapy. Then, at the beginning of December of last year, Isabella was given the all-clear for the breast cancer.
But the good news was short-lived.
Gillian said: “On December 18 I took her Christmas shopping and the next morning she was at the top of the stairs and I thought she’d had a stroke. She didn’t know who I was and she was disorientated.
“The doctors came out and didn’t know what was wrong with her. She just deteriorated.”
Isabella was taken into hospital where she went into a coma and passed away.
Comment by Cadrina — February 11, 2006 @ 2:23 pm
Hi, not sure if this is best page to post this on but:
I wrote to MASTA asking for them to include info on
Lyme on their site:
http://www.masta.org/
They replied:
Thank you for your e-mail. We don’t currently have
Lyme disease on our website but it is on our list of
jobs to do. Our site is about to be redesigned so we
will hope to include some basic information on this
disease in the future.
Best wishes
Lynda
Nurse Adviser
MASTA
I will reply with some useful links in Bada-uk
BW
=^. .^=
Comment by Tabbycat — May 15, 2006 @ 6:36 pm
Hi Tabby,
Well done on your letter to MASTA. It’s good news that they intend to include information on Lyme disease.
Comment by Wendy — May 16, 2006 @ 11:29 am