Twins who break the golden rule of their illness talk living with Cystic Fibrosis

KU students with Cystic Fibrosis (CF) decided to stay together despite it causing them serious illness.

Twins Jenny and Danny Silva, 20, have described their case as unique and count themselves lucky, being able to have someone else with their condition.

“The golden rule of it is not to be close to other patients. We’ve broken that golden rule, but we didn’t have a choice. I’ve had my twin my whole life. We shared a room since birth, until we came to university, where we live apart.” Jenny said.

“We get each other’s infections, but we’re alright with that. If I get sick I have that one person I can discuss it with. Anything I go through, she goes through the same. We weren’t willing to sacrifice that for the sake of a few infections.”

Cystic Fibrosis is a genetic condition which affects around 100,000 people worldwide. According to the CF trust, there are more than 1,400 possible mutations of the CFTR gene which causes the disease.

Since each person with CF has two of these mutations, there is never one set of symptoms for the condition. However, sufferers are extremely susceptible to catching each other’s infections, so are discouraged from mixing.

The golden rule is not to be close to other patients. We break the golden rule, but we didn’t have a choice

The pair do physio twice a day as well as taking three sets of medication one being enzymes, before each meal, as excess mucus caused by the disease worsens digestion.

“I see it as a game to take all my meds perfectly, I use an app to get a perfect streak,” Jenny said.

“It sounds like a lot but really it’s very little compared to what people have to do when they’re worse off than we are,” adds Danny, who studies architecture.

Danny has only put her studies on hold once to stay in hospital, during secondary school, but Jenny has had to three times. Despite the girl’s identical genetic make–up, environmental factors cause them to react to infection in different way.

Their normal life has been fairly uninterrupted, however, some issues such as travelling cause anxiety for the twins’ family.

“I don’t think I’ve stayed away from them for more than a short holiday,” Danny said.

“Studying abroad for a year, for example, shouldn’t be a problem for someone like me who is doing relatively very well with my health, but picking up a virus from abroad and not having familiar faces to talk to may lead me to take my health less seriously and would have long term effects – more than the year abroad is worth.”

The pair love to sing and have found it therapeutic for their condition.

“I have always tried to convince my doctors that singing has done wonders for my lungs – but it’s just not proven yet, or I haven’t heard of the research.

“I occasionally ask if the wave-length of the notes I sing are specific enough to vibrate my lungs and do the same work as my ‘flutter’ during daily physio routines. But I never once convinced the doctors,” Danny said.

Jenny recently took part in a CF ‘virtual choir’ which featured in the charting album ‘We Stand Together’, produced by Kingston alumnus James Hawker.

“Even though my condition is not serious at the moment, for which I’m grateful, it has always made me just that bit more level-headed when making decisions and not allowing my emotions to get the better of me.

“Having Jenny by my side, being my age, going to the same schools and now university and having very similar experiences, has been a blessing that I cannot measure,” Danny said. “We encourage each other to keep going with the medication that it’s all not done in vain.”

For more information about Cystic Fibrosis, visit the CF Trust.