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An Enfield woman is on a mission to raise awareness for rare blood disease mastocytosis
A woman who suffers from a rare blood disease is on a mission to raise awareness after Enfield doctors were unable to diagnose her.
Helen Shakallis, of York Road in Winchmore Hill, suffers from mastocytosis, a condition in which there are too many mast cells - immune system cells that react to bacteria or viruses - in the body.
Following three years of debilitating symptoms and with no doctor or hospital in the borough able to diagnose her, she went to a specialist at St Thomas and Guy’s hospital in Westminster.
She initially had a biopsy at Barnet General Hospital in Wellhouse Lane, but nothing was diagnosed. She continued to have allergic reactions and other debilitating symptoms which turned her life upside down.
She said: “I would have freckle-type permanent rashes all over my body and anaphylactic shocks that resulted in me not being able to leave my own home; I became so allergic to everything.
“Even laughter or anger could set me off again and it has been very tough. Since receiving treatment I have been able to leave my house on a few occasions but it is still difficult."
As a result of being diagnosed in October, 2013, the 49-year-old joined the UK Mastocytosis Support Group and wants to raise awareness in the borough.
She said: “This is a disease which is so rarely diagnosed in the UK that a lot more people could have it and believe they have something else.
“It is more common in children than adults but is still pretty rare. The support group believes I am the only person in the borough to have been diagnosed with it. I believe it is imperative that we can try and raise awareness of the disease because getting the treatment sooner will be essential.
“Many of the symptoms are misdiagnosed for MS and so many other diseases and this could be really dangerous. I hope that if we can publicise this disease, then there is more chance of it being diagnosed straight away.”
The support group have created posters and flyers to be handed out and are waiting for the go ahead from NHS England.
For more information, go to www.ukmasto.org
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