Blackrock woman learning to live with rare illness
BLACKROCK RESIDENT MARIA BINGHAM TALKS TO MARGARET RODDY ABOUT LIVING WITH AN INVISIBLE ILLNESS
SOME DAYS JUST TO TAKE A SHOWER, COOK DINNER, OR GO FOR WALK LEAVES ME EXHAUSTED, SWEATING, IN BURNING PAIN FROM HEAD TO TOE, HEADACHES, NAUSEA AND VERTIGO.
BLACKROCK woman Maria Bingham was just 24 years of age when she was diagnosed with Cushing’s Disease, an extremely rare condition which affects one in 200,000 people. ‘If we think that 1 in 4 people will develop cancer during their lifetime, then we can begin to comprehend how rare Cushing’s is,’ says Maria, who is a member of the Pituitary Foundation Ireland.
She has decided to speak out to raise awareness about Cushing’s Disease in the hope that more people might get the treatment they need.
‘I was diagnosed with my first tumour in March 2001 at 24 years old,’ recalls Maria. ‘I had gained over 2 stone in a few months, and went from a dress size 10/12 to 18/20’
She had all the characteristics of Cushing’s: a moon face, buffalo hump, fat pads, her stomach had expanded to the point that she looked 6 months pregnant with angry looking purple stretch marks.
‘I had no energy, was sleeping a lot, I had headaches and my memory and concentration were affected,’ she recalls. ‘I was growing facial hair, I developed acne, my blood pressure was high, my sugar levels high, my muscles were sore and weak - just to walk a few yards was agony and exhausting. Emotionally my moods were terrible, I was crying, angry, depressed.
‘At 24 years of age it was a nightmare,’ she says. ‘ What should have been the most active time of my life was spent feeling rotten and lying in bed.’
Thankfully, Maria was diagnosed quickly by the consultant at her local hospital and referred to Professor TJ McKenna at St Vincent’s hospital.
She appreciates that she was fortunate to be diagnosed so quickly as many patients are undiagnosed.
‘So many patients are turned away and spend years seeking a diagnosis because they are considered fat, inactive and overeating,’ she says. ‘I was lucky that I was very slim all my life, so it was completely out of character for me to gain so much weight.’
However her treatment didn’t run smoothly as her first surgery in July 2001 had to be abandoned as her carotid artery was punctured and she was haemorrhaging.
Another attempt at surgery two days later had to be abandoned as the surgeons couldn’t bypass her carotid artery, even using the Computer Stealth Guidance system.
Refusing to give up, Maria requested a referral to Prague in the Czech Republic for Gamma Knife Radiosurgery which was not available in Ireland at the time and was treated under the E112.
‘I have dual citizenship as my mum Viola was Czech,’ explains Maria. ‘She married my dad Bernard during the Communist era in 1975, when they met in Prague while my dad was musical director with the Dundalk Group Players who travelled to a festival there with their production of Joseph and the Amazing Technicolour Dreamcoat.’
Maria flew to Prague with her parents on September 11th 2001. ‘ We did not know until we reached Prague airport that the Twin Towers had been attacked.’
She was admitted to the Na Homolce hospital where an MRI showed she had a 6mm tumour on hwe pituitary gland, which itself is the size of a pea. She underwent surgery by Gamma knife, which helps preserve as much of the pituitary gland as possible.
‘At my age this was a major concern because they did not want to disrupt my hormones and prevent my ability to have a family,’ she explains. ‘It took about 2 years before my cortisol levels reduced and I turned to Weight Watchers and the gym to lose the weight.’
Maria resumed her normal life but sadly, began to notice that something wasn’t right. ‘In 2006, my bloods showed I had mildly elevated cortisol levels, but my MRI was clean (when the tumors are in the early stages they cannot be seen).
Three years later, in October 2009, her endocrinologist Prof. Donal O’Shea said he was concerned at her cortisol levels and she had an MRI scan in February 2010. The following month she was told that she had a recurrence of the tumour.
She went back to Prague in May 2010, where a high spec MRI showed that this was a new tumor on the opposite side of her pituitary gland and once again she had gamma knife radiosurgery.
While Maria is in remission, she is living with an invisible disability, and has Fibromyalgia, chronic pain and fatigue secondary to Cushing’s Disease.
‘I have not been able to return to work, and my quality of life is badly affected,’ she says.
‘I feel and act like I am in the body of 70 year old. Mentally and emotionally it has also been very difficult to cope with the ‘invisible disability’ because I ‘ look well’ to people.’
‘Some days just to take a shower, cook dinner, or go for walk leaves me exhausted, sweating, in burning pain from head to toe, headaches, nausea and vertigo. I suffer brain fog, my memory and concentration is poor. But with the help of one of my doctors in Prague, I’ve learnt that although the symptoms in remission can present as depression, loss of motivation, decreased quality of life, it is in fact due to long-term exposure to high levels of cortisol (the body’s natural steroid), two surgeries, trauma to my carotid artery, two gamma knife radio surgeries and the trauma of the illness itself.
‘ I have spent the last ten years fighting the pain, tiredness, dieting with no success, but now I’ve reached a level of acceptance of my limitations and I am learning to say ‘no’ when I don’t feel well and to pace myself to avoid flare-ups of fatigue and pain.’
None the less, Maria tries to enjoy life as much as possible. She has inherited her parents love of music and enjoys going to musicals and show, and likes to travel when she feels up to it.
Even though she is in remission, she has to inject herself with hormone replacement therapy each night as she has Growth Hormone Deficiency.
‘Maybe someday there will be a better understanding of the neuro-endocrine system and more funding and research will be allocated to Cushing’s Disease and Pituitary tumours, but given the rarity of the illness, patients must try to raise awareness and support each other through groups like The Pituitary Foundation Ireland.’
Anyone seeking support or information can find further information on www.pituitaryireland.ie and on Facebook. The organisation’s AGM will be held on the November 2nd, 12:30-17:30 in the Red Cow Moran Hotel, Dublin.