Genetics Clinic hopes to lift the cloud surrounding inherited illnesses
GENETIC AND neurological conditions tend to breed fear and uncertainty in people.
Finding out a child is suffering from a condition like cerebral palsy, dwarfism or Down’s syndrome is one of the things parents dread the most.
But experts say it doesn’t have to feel like the end of the world.
Like other sectors of modern medicine, the prognosis and treatment of neurological and genetic diseases have come a long way since the days it was considered “a bad thing”.
There are many ways to deal with such conditions, from the early stages of pregnancy to the actual therapy.
In Cyprus, sufferers often tend to be stigmatised; partly due to the size and mentality of the island but mainly due to the lack of awareness and information on the subject.
And this is something the island’s Genetics Clinic is trying to change with a new bicommunal project, aimed at promoting public awareness about genetics and eventually easing sufferers’ integration into society.
“With experience we found that people lack education, information and awareness over genetic and neurological conditions, while they are not sensitised,” Dr Violeta Anastasiadou, a clinical geneticist and the head of the Genetics Clinic’s team, told the Sunday Mail.
“Sometimes they are afraid of people with genetic conditions, their health problems and the responsibilities that surround them.
Other times they are prejudiced and they think that a genetic condition means only negative things, so they behave in a manner that brushes children with genetic syndromes aside,” she explained.
“So we felt it was important to inform and teach not only the families who have children with such conditions, but also society in general.”
Dr Anastasiadou also apportioned part of the blame to the media, which she said sometimes offered useful information “but other times you get dramatic details, which do not help the families at all”.
The clinic, based at both Nicosia’s Makarios Hospital and the Cyprus Institute of Genetics and Neurology, first presented the project to the American Embassy in Cyprus, which thought it was a good idea and offered funding.
The funding helped prepare a special informative trilingual leaflet – in English, Greek and Turkish.
Further approval was received by UNDP, which also offered to fund part of the project.
Apart from the special leaflet and a website which is currently being prepared, the genetics team is in the initial stages of forming a network of patients, their parents, medical experts and basically any member of public would be interested in being part of it.
“We will begin an out-reach campaign to involve more people,” Kristian Theochari, the team’s information scientist explained.
“We are going to travel around Cyprus setting up meetings in local areas and communities and we are going to reach out to people,” he added.
The network will among others aim to bring families suffering from all types of conditions together, in the form of counselling groups and in the presence of medical experts and psychotherapists.
So what does the Genetics Clinic do?
The Genetics Clinic deals with all genetic and neurological disorders, treating people all over the island. “We examine patients and we see families and couples, who are either suffering from symptoms of a genetic or inherited condition, or who found themselves with a newborn child with a syndrome, like Down’s Syndrome, or a child with a cleft lip or palate, and so on,” said Dr Anastasiadou.
The clinic deals with the healthcare aspect of genetic and neurological conditions and also offers counselling and support, to both the patient and their family.
“We help them manage their health problems but also their social and educational problems.”
Couples that suspect they may have a hereditary genetic condition consult the clinic and plan ahead, which means the clinic has to deal with a number of sensitive issues and ethical dilemmas, such as a couple’s decision to opt for a termination of pregnancy.
“Termination of pregnancy is a decision of the couple solely,” Dr Anastasiadou explained. “So they need to know the good and bad things about a situation and how well or how bad we can manage it. And then they can make an informed decision.
“Couples receive a lot of societal pressure, or extended family pressure, either positive or negative depending on their own perceptions – religious, social and so on – so it’s not an easy decision to make.”
She added, “There is no such thing as right and wrong for everybody in these cases. Every case is different and it is important that you take time and leave these people the space to make their decisions”.
As the team’s genetic counsellor Turem Delikurt explained, genetics has a language of its own, so when families are faced with a condition for the first time, they are also faced with an entire new language. “So we try and simplify the language to a level they can understand, because unless you understand the information, you cannot make informed decisions based on what you can’t understand”.
A genetic condition can take place anytime between conception and birth, while others are due to family genes.
“Or a genetic fault could be inherited through family members who are unaware of having it; so a genetic condition can run in the family without being detected,” added Dr Anastasiadou
Some symptoms aren’t evident and can only be spotted with a paediatric examination, for example a heart murmur.
“It is very important to look at the positive side and realise that all of us are at risk of having a child with a genetic disorder,” the doctor pointed out.
Many times we don’t know early enough and are not able to help as much as we would like to. And it is important that this perception is accepted in society and in this way we expect that prejudice will be lessened.”
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