An Ipswich woman whose life has been turned upside by a disabling and little-understood illness has told her story to mark Rare Disease Day.
At the end of 2016, Helen Taylor was diagnosed with myasthenia gravis (MG), a condition that is thought to affect just 11,000 people in the UK and causes muscle weakness.
When the disease struck, Ms Taylor, now 47, was juggling an extremely busy schedule. She had recently launched Suffolk’s first feminist society, had a job as a finance analyst and had signed up to volunteer for the Ipswich Winter Night Shelter.
The symptoms of her illness first presented as a drooping eyelid and complete exhaustion.
Ms Taylor deteriorated quickly and she began to find it difficult to talk, eat and drink, breathe, walk and use her hands.
The mother-of-four was put through a series of tests that led to a diagnosis of MG, where the patient’s antibodies attack the communication system between their brain and muscles.
The cause is not clear, but has been linked to problems with the thymus gland.
Due to the severity of Ms Taylor’s condition, surgeons decided to remove her thymus, which was found to be enlarged and cancerous.
Ms Taylor is now managing her MG with medication and there is a chance it will go into remission, which means she will be symptom-free, but it can’t be cured.
“My life is nothing like it was before,” said Ms Taylor, who is currently unable to work.
“Myasthenia is a really complex disease and it’s incompatible with extremes of any kind – temperature, emotion, activity.
“I’ve gone from being somebody who was incredibly busy, driven, ambitious and dynamic, to someone who has to take everything very slowly.
“I can’t afford to get upset, or angry, or excited, so my whole life now is around managing my symptoms, staying calm, having a very sedate lifestyle, which is the opposite to who I was before.”
Ms Taylor praised the NHS staff who have treated her, and also the support of her husband, Mark.
In a bid to raise awareness of this lesser-known condition, Ms Taylor is writing a book about her experiences, called MG and Me, and is seeking a publisher.
Ms Taylor can be contacted via her website and is happy to answer questions about MG and offer support to patients.
More information about MG can be found on charity Myaware’s website.
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