A support group to help people suffering from a rare disease which can kill has been set up by a Bradford woman.
Lynne Jacques, 64, of Clayton, was diagnosed with potentially life-threatening Microscopic Polyangitis after she lost all feeling in her left arm and the use of her fingers and both feet.
Now on the road to recovery, she has become a trustee of the charity Vasculitis UK, which supports sufferers throughout the country.
The new West Yorkshire branch of the charity will meet twice a year at Gomersal Park Hotel in Cleckheaton, with talks by health professionals and question and answer sessions.
Vasculitis involves an overactive immune system and inflammation of the blood vessels, which can cause blockages and death of tissues.
Different types of the condition can cause loss of sight and deafness, kidney failure, skin scarring and damage to the lungs, brain, nervous system and the heart, and ultimately the loss of body parts. It has no known cause and no cure, but it can usually be controlled by drugs such as steroids and immune suppressants.
Some of the common initial symptoms include flu-like symptoms with muscle and joint pains, fever, unexplained weight loss, ulcers that do not go away, immense fatigue, palpitations, weakness in limbs, sinus problems, a persistent cough and shortness of breath.
The day after Mrs Jacques was taken to Bradford Royal Infirmary by paramedics for tests, she had a kidney biopsy to confirm the diagnosis.
She said: “That evening I was in agony and initially I thought I was having a heart attack.”
Her health problems started about a year before when she had a bad flu-like virus and lost her voice for six weeks. Then she got a chest infection which developed to fibrosis on her lung, which the medical profession put down to industrial injury. She rapidly lost a stone in weight. Finally she started to have fainting episodes and her right foot went numb, quickly followed by the left foot.
Her symptoms were eventually brought under control by steroids and a chemotherapy-type drug, with follow-up treatment to suppress her over-active immune system.
Her advice to fellow sufferers is to be patient and make sure you tell your doctor every little symptom.
She said: “I used to always be at my doctors. If I had mentioned some red patches that had flared on my legs at the time of the chest infection my diagnosis may have been made sooner.”
Airedale Hospital worker Cath Seal joined Vasculitis UK after returning to work eight months after being diagnosed with Churg-Strauss syndrome, a similar type of vasculitis “Because it is such a rare disease most health professionals have never even heard of it. This does make it very scary and difficult to get accurate information about the disease,” she said.
“At first I went along to the Yorkshire support group held in Doncaster and was really impressed by how dedicated the volunteers are who run the charity, but I’m delighted that there will be another support group closer to home which will put me in touch with more local sufferers.”
To contact the West Yorkshire Vasculitis support group, -e-mail: Lynne.jacques@sky.com, or call (01274) 412378.
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