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My life with illness docs didn't even know about
FOR 22 years, Sally Hooker had a rare disease her doctors didn’t even know existed.
It wasn’t until she typed one of her symptoms into Google that she realised she might be one of only two people in a million with systemic mastocytosis.
By then, she had endured intense fatigue, skin lesions, unbearable stomach cramps, diarrhoea, food and drug intolerance, bone and muscle pain and headaches. The symptoms got worse during her two pregnancies and continued to worsen as she grew older.
She still suffers the symptoms but is now much more philosophical about her disorder.
She explains: “I look at it like someone who has diabetes might view their condition. It’s something I have to work my way around.
“It has interfered with my time with the children and the ridiculous tiredness gets on my nerves.”
Her problem started on a holiday in Corfu.
With her fair hair and fair skin, Sally had always suffered in the sun, but nothing prepared her for the stifling heat on the Greek island.
Sally, of St Andrew’s Road, Clacton, recalls: “At that point, I’d never travelled further than Germany. I simply was not used to such extreme heat and humidity. Within hours of arriving, I noticed a rash of freckles had appeared and was covering the tops of my thighs.”
It is still unclear if the heat triggered the mastocytosis or whether it also was in her body, but the rash turned out to be the start of something which would change her life.
She says: “Three months after my son was born, I experienced appalling stomach cramps, diarrhoea and bone pain in my knuckles and knees.
“The GP diagnosed irritable bowel syndrome and possible rheumatism and arthritis.”
By then, the freckles had spread and started to cover her buttocks, stomach, back, feet and chest, but midwives and doctors had never seemed particularly bothered by them.
Sally adds: “With my second pregnancy, I was extremely ill and the illness went up a few notches.
“After the birth of my daughter, two years later, I was unable to tolerate any form of alcohol. The pain was so intense after a few sips, my doctor thought I had a stomach ulcer, though the tests came back negative.”
By now, the cramps and diarrhoea were a daily occurrence, along with bone pain, fatigue and continual menstrual bleeding.
Doctors suggested the rash could be linked to the bleeding, so Sally had a hysterectomy.
She says: “I didn’t know at the time anaesthetic could be bad for me.
“I seemed to tolerate it well enough and afterwards I felt great, but the tiredness didn’t go away, nor did the bleeding, while the rash was now more like galloping German measles.”
She read up on ME and chronic fatigue syndrome and tried homeopathic remedies, but nothing helped.
A dermatologist suggested she had urticaria pigmentosa – skin lesions in layman’s terms – and it was when she Googled the term, she found the UK Masto Support Group.
She says: “It turned my life around. There are not the words to express how much I owe Irene Wilson, who runs the group. We meet once a year and e-mail each other all the time.”
Sally now visits St Thomas’ Hospital, in London, every year for a check-up she refers to as “her MoT”.
A former Clacton Junior School secretary, Sally is no longer able to work, yet she was told she couldn’t claim disability living allowance because she would still walk unaided and cook for herself.
She has learned to live with the condition, but has to be wary of what she eats, since tomatoes, fish and shellfish, caffeine and some medication can worsen the symptoms.
Sally is sad her condition has encroached on her time with her children, now 18 and 16, but refuses to let it upset her too much.
She adds: “I have had all sorts of things happen to me in my life. I could get bitter and angry, but I find it’s counterproductive.
“Now I have found the support group and others like me, it has cheered me up.”
For details, go to www.uk masto.co.uk