Fareham grandmother who suffered allergic-type reactions on her skin shares story of rare condition
A FAREHAM grandmother who lived with a rare and painful undiagnosed condition for years is sharing her story in the hopes of helping others.
Former nursery worker, Tracie Temple, finally had an answer to some of her symptoms including a hive-like rash and hot flushes that she had first noticed almost 20 years prior, when an appointment for a hysterectomy at Queen Alexandra Hospital back in 2007 led to a diagnosis of cutaneous mastocytosis.
The incurable condition is characterised by itchy, brown or red patches on the skin caused by the increased production of mast cells by the bone marrow, which release large amounts of histamine and other chemicals into the blood.
But 10 years later Tracie was still suffering with the rashes as well as bone pain, insomnia and allergic-type reactions to different foods.
‘I kept being fobbed off by doctors,’ Tracie said.
‘At this stage I was told my symptoms were caused by the menopause.
‘I was getting to the point where I thought I was going mad, the doctors were telling me it was just this or just that and I thought I have never felt so ill in my life - I know my own body and I knew it wasn’t right.’
After several consultations a rheumatologist arranged for her to undergo a bone marrow biopsy and ruled that she had systemic mastocytosis - which can affect more areas of your body than just skin, including your internal organs.
She said: ‘It has made day-to-day life so difficult.
‘One day I might be OK to do things and the next I’m in too much pain. It’s hard for my grandchildren because they don’t understand why Nan will be able to play football with them one day but not the next.
‘And I had to give up my job as a nursery worker looking after babies in 2016. I was struggling to get up off the ground.’
Her diagnosis also means she can suddenly need the toilet without much warning.
‘I was given a card by Macmillan to use if I’m out in public to show people if I need to get to the front of a queue for the toilet,’ she said.
‘But so many people give you dirty looks, it’s horrible.’
It comes as the Spinnaker Tower in Portsmouth is set to be lit up purple on Wednesday, October 20, in honour of international mastocytosis and mast cell diseases awareness day.
It is estimated that around one in 150,000 people in England have systemic mastocytosis.
There is no known cure for mastocytosis but several treatments can be used to relieve symptoms.
Tracie has been taking a drug called omalizumab once a month for the past 18 months, which has helped with some of reactions.
She also tries to eat a low histamine diet to help control her symptoms.
Tracie added: ‘If sharing my story helps just one person then it’s worth it because there are people out there who have never heard of it.’
For more information about the UK Mastocytosis Support Group visit ukmasto.org.