hope schreef:Ik hoop dat ze die link vinden! Hopelijk kan hij dat voor ons allemaal!
John Caudwell
3 uur ·
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We are delighted that our Caudwell Lyme Disease website has gone live.
http://Www.Caudwell-lyme.Net
Please share the link prolifically. We need to spread the word to the whole population not just the Lyme community.
Unfortunately my family are still very ill but that won't stop the drive towards the education of the medical profession, the politicians and the general population, to eventually enable Lyme sufferers to be diagnosed and treated appropriately.
That day needs to come very soon. Please do all you can to help spread the word using my Facebook page, our website and any other material that is powerful.
Minister orders Lyme Disease review
10 May 2016
Ministers have ordered a major review of the diagnosis, treatment and transmission of Lyme disease amid concern about a quadrupling in cases over the past decade.
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The new reviews overseen by the Government Chief Scientific Advisor will examine diagnosis, treatment and transmission of disease.
In addition, the National Institute of Health and Care Excellence will draw up guidelines setting out the care that those diagnosed with the condition should receive, in 2018.
The 63-year-old tycoon said that eleven members of his family had been diagnosed with the disease, which he believes can be passed to a baby during pregnancy or to an adult by sexual contact, lying dormant inside the body for years before attacking.
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In addition, the National Institute of Health and Care Excellence will draw up guidelines setting out the care that those diagnosed with the condition, should receive, in 2018.
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Call for participants in a study on the genetics of Lyme disease
The BCA clinic and BCA Lab in Augsbug, Germany, are conducting a study into the role of genetics in Lyme disease symptoms. They are looking for participants in the study. Caudwell Lyme Disease charity welcomes this study and urges all Lyme disease patients in the UK to offer their participation if they fit the selection criteria.
PUBLIC HEALTH ENGLAND ADMITS ONLY 10% OF UK LYME DISEASE VICTIMS GET DIAGNOSED BY THE NHS EACH YEAR.
WHAT IS IT LIKE HAVING LYME DISEASE?
“I am only eleven, and have been unable to run around and play with my friends for almost two years,” one patient told Caudwell Lyme Disease. Another explained, “With no way of explaining to anyone why I was permanently ill, I had to struggle on with no knowledge of my true condition. Imagine that. Even people with cancer can explain why they are ill. I never could – not even to myself.” Visit our patients’ page to read more stories of living with Lyme disease.]
Lyme Disease -Just A Minor Bite Or A Major Epidemic?
In the UK, the NHS say there are between 2,000 to 3,000 cases a year. In the USA there are 300,000 new cases reported every year. In Germany there are 250,000 cases. Testing in the UK is inadequate compared to other countries. It is said that over half of NHS negative results are not accurate. Recent data collected by John Caudwell and his team now suggests that there could be as many as 45,000 cases in the UK.
Thirteen UK Lyme disease patient case studies
The following case studies were edited and summarised by Natasha Metcalf and Louise Dean, founders of patient support group Lyme Disease UK. They were picked from several hundred stories submitted by patients, all members of Lyme Disease UK.
They were difficult to select, not because the editors struggled to find ‘typical’ cases, but because the patient experience was so similar for everyone with long term Lyme disease.
JESSICA BENNETT, AGE 30
Model, athlete and business woman Jessica Bennett contracted Lyme disease in 2009. Despite an erythema migrans rash and private blood tests showing Lyme, she was denied treatment on the NHS
Jessica was a model, sports coach/nutritionist training professional athletes, fitness magazine author, charity volunteer and successful business owner. She was mid-way through a post graduate degree but had to abandon studies. Got sick in 2009 after a bite in Germany. Declined rapidly in 2012 after an EM rash covered her entire thigh. Was not diagnosed at the time. Became completely bed bound 2013-2015 and put on over 3 stone due to thyroid and severe gut issues. Symptoms included hair loss and facial palsy, bladder issues, hearing and sight deterioration and inability to walk. Several hospital admissions. Diagnosed with ME and fibromyalgia. Discovered Lyme disease after doing her own research. NHS test positive. 4 weeks of IV antibiotics were administered. Symptoms reduced and quality of life improved. Once stopping the antibiotics, she becomes bedridden again and started having daily seizures. NHS refuse further help. Jessica has had to close her businesses, sell her car and other possessions and spend her life savings. Now fundraising to get treatment in America. On disability benefits since 2013.
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