MY HEALTH EXPERIENCE:I was a victim of rubella – and it has ruined my life, writes ANN KENNEDY
RECENT REPORTS that the number of children being given the measles, mumps and rubella (MMR) vaccine is lower than it should be, have caused me concern. I was a victim of rubella (German measles) before I was even born and it has ruined my life.
Doctors say that rubella has been eliminated, but if children are not being vaccinated there is a possibility that a viral cluster breakout will occur. It still exists in some parts of the developing world.
Congenital rubella syndrome (CRS) is a devastating condition. Its effects are lifelong and there are many late manifestations. At the age of 57, I am currently suffering from multiple illnesses, both psychological and physical, which are consistent with CRS.
Research has shown that the body of an adult with CRS ages 10 times faster than that of the average adult, and that life expectancy is 10 years less.
Very little is known about CRS and the information I have been able to find out about it has come from the Helen Keller Foundation in the US, and even then it’s a minefield to traverse archival documentation.
Rubella has particularly serious consequences for pregnant women. My mother contracted rubella from my three-year-old sister when my twin sister Margaret and I were both in the womb in 1952.
She did understand the serious implications of this and expected us to be born as “monsters”.
We appeared to be normal for the first number of years, but by the time we went to nursery school when we were four I felt different and was obviously different in subtle ways.
I did not relate to the other children, I was hyperactive and got excited all the time. I was bullied a lot.
Both of us were extremely fussy eaters and drove our mum demented. We tolerated only very simple foods and none with strange taste and textures, and that’s still the case.
My sister and I were both severely deaf, but we never had hearing aids at school. It was only when I was an adult that I realised how poor my hearing was.
My parents were told we would never amount to much. Indeed, we were last in our class, but that was down to our deafness and CRS, which can see children develop on the academic spectrum much more slowly than others our age.
Neither of us could read fluently until we were about 11 years old. A recent assessment in London has shown that I have higher than average intelligence and it was found that I could have done anything in university, but I couldn’t even get there because of my academic underachievement and “number blindness”.
Nevertheless, I have managed to make a successful career for myself and that was recognised when I won an Arts and Disability Ireland award in 2003.
I became an animator, working on the movie version of Watership Down and I have had six illustrated books published, some of which have won awards.
My work has been exhibited and one of my paintings was bought by the former American ambassador Jean Kennedy-Smith. I was also able to undertake graphic design work, my financial mainstay.
However, I could never work with others in the same environment due to fear, so I freelanced and did my work at home alone, my confidence was so poor and terror so great.
My sister, who is returning home from England having lived there for most of her life, has a doctorate, despite having no school qualifications to start with.
She is a campaigner for people with disabilities and is going to feature in RTÉ’s Would You Believe programme. Unfortunately, she has Parkinson’s disease.
I went to Dún Laoghaire College of Art in 1974 and left with a distinction after four years studying design and animation.
It brought a burst of wonder and hard work, but things were difficult socially and I got extremely depressed and entered the psychiatric system – the only option at that time.
This was very distressing and was exacerbated by my inability to communicate my feelings of abandonment to others.
I have been in and out of psychiatric care for 30 years, but this is mostly because no one knew why I was so problematic, I never had a mental illness whatsoever. I simply relate very poorly to other people. I have no friends and I have never had a sexuality.
My failure to understand the boundaries between people has got me into trouble. I am always brutally honest with other people and myself and could not tell a lie to save my life.
Two years ago, I went to a CRS conference in Crewe, Wales, convened by the Sense Scotland organisation and I spoke to Dr Jude Nicholas, a world authority on neuropsychology, deaf/ blindness and rubella. He is based at the Vestlandet Resource Centre in Bergen, Norway.
He identified my psychological condition as being the result of a frontal lobe atrophy (or lesions on my brain now visible), which is another consequence of CRS.
The frontal lobe of the brain is the part that regulates feelings and emotions. This would impair a person’s ability to truly relate to the world in terms of social engagement and relationships.
Communications skills can be extremely poor, verging on totally inappropriate, thus leading to incorrect and fruitless treatments.
When he told me this, I broke down and cried. I had taken every psychiatric drug known to man, including lithium. I left the psychiatric system four years prior to this, and dropped all medication as well.
At one point I became very ill, with almost a complete system shutdown. Doctors were perplexed and I think their own preconceptions made them believe it was “all in the mind”.
Prior to this event, no amount of “escape” tactics allowed me to shake my loneliness and feelings of difference.
With Dr Nicholas’s help, I discovered that what I had was not the “bad girl syndrome” as people believed, but something real and organic.
Along with the cognitive dysfunction issues, I also have a host of physical illnesses which are directly related to rubella.
As a child I had Pes Cavus feet, which is a deformity and consistent with infection from the virus. My feet were always painful.
I have a number of autoimmune diseases. My hypothyroidism is consistent with CRS. I also developed Crohn’s disease in 1999. I had surgery for this in Dublin, which saw me being discharged from hospital with an infected wound which burst open at three in the morning two days later, when I was convalescing in a nursing home.
In relation to the complete collapse of my body in 2005, which I mentioned, the initial diagnosis was myalgic encephalomyelitis (ME). This is an immune dysfunction which doctors often confuse with another condition, chronic fatigue syndrome (CFS).
An eminent specialist from Imperial College London, who came for a talk with the ME Association, told me I could not have ME and Crohn’s disease as one was the result of an overactive immune system and the other an underactive one.
Eventually came the diagnosis of Sjögren’s syndrome, another autoimmune disease, which results in the moisture glands drying up and carries horrible fatigue with it, Raynaud’s and possibly Lupus, a potentially fatal condition.
I also have chronic muscle myopathy with a suggestion from neurologists in London that some of my movement difficulties could have been caused by the administration of psychothropic medication over a 30-year period in the psychiatric system known as Tardive Dyskinesia.
I now have Ataxia , dystonia . I walk with two sticks or use a mobility scooter and I have an adapted van.
My care has been overseen by many consultants in London where stigma and prejudice have never been a problem as they have been in the Irish system.
I beg the mothers and parents of this State not to inflict a life of misery on their children, which started for me at four years of age.
It has been a life of such unhappiness and loneliness, yet with a potential so great. I carried that burden and my mother watched it being played out, feeling guilty and lost, resulting in her own feeling of hopelessness, too.
I don’t want this for the children of the next generation and onward.
There may be parents out there who still believe that the MMR vaccine causes autism or won’t get their child vaccinated because it is no longer a priority for health professionals, given the resources that are being put into administering other vaccines.
The consequences of a rubella outbreak outweigh any other consideration. It is just too horrible to contemplate.
A child born with CRS is infectious for pregnant mothers and is thought to be so for about seven to 10 years. It’s a horrible idea that I could have infected others in this way.
In conversation with Ronan McGreevy
