Love in the time of Lamellar Ichthyosis: How fate united Sivan, Salini

By quirk of fate, Sivan and Salini entered wedlock thanks to the rare genetic skin disease they had. Image Credit: Instagram/sivadas.siva.581

Lamellar Ichthyosis (LI) is a rare genetic skin disease that affects one in six lakh people. The affected people will have large, dark, plate-like scales all over the body, and their ability to sweat decreases leading to heat sensitivity, hair loss, dehydration, and respiratory problems in many cases. In other words, this ain’t a condition that would easily open the doors for Cupid to strike.

But providence had other plans for Sivan, hailing from Thrissur and Alappuzha native  Salini, both suffering from LI.By quirk of fate, Sivan and Salini entered wedlock thanks to the rare genetic skin disease they had. This is a tale of lingering romance sprouting from LI.

Sivan and Salini never thought they would be able to get married due to the physical and emotional burden LI inflicted on them as well as the perceived indifference of society, which doesn’t offer much empathy to the victims of LI. The opposite happened.

The couple met through a WhatsApp group for those with LI disease. They first talked within the group. Gradually, as they developed an affection for each other, private chat came into play. Romance bloomed, culminating in the marriage.

How cupid struck through disease
Sivan was a member of the WhatsApp group for years. But Salini came to know about it and joined it only a few months ago. Initially, they struck a rapport. Salini then shared links to her YouTube channel and Sivan began to relish it. The rest is stuff of fairytale for them.

Sivan liked the talkative ways of Salini. He did not hesitate to take the initiative to get married. And Salini had no hesitation to okay the proposal either. They tied the knot at Puthoor Sree Mahadeva Temple on January 14.

Sivan and Salini. Image Credit: Instagram/sivadas.siva.581

Meetings on the sly
Though they developed a bond, the couple did not tell others about their affection. They did not get much time to spend with each other also and most of the meetings were in the collective of LI patients. None of the members of the LI collective knew about the couple’s plans to get married. The mobile phone played the role of the facilitator of the budding romance, says Sivan.

“We first decided to meet at the railway station ahead of the meeting of LI collective in THrissur. As we wouldn’t get much time during the meeting, we decided to meet at the railway station,” he says.

But Salini was nowhere to be seen as Sivan waited anxiously for hours at the station. Later, she called to ask if he wasn’t coming to the meeting– She had to go straight to the meeting after going somewhere else with her friend. Then they met a the venue of the LI collective itself.

Lack of empathy
After the couple’s video went viral, there were many who criticised the couple on social media. Their rant was that they could not even take care of themselves and how the couple would take care of each other. Some ill-informed minds also wondered what would happen if they had kids, without knowing that the kids need not have the disease. Parents of Sivan and Salini do not have LI, the couple pointed out.

Sivan and Salini. Image Credit: Instagram/sivadas.siva.581

Moreover, they just liked each other and hence decided to marry with a clear conscience. Such a rare genetic disease is not the wages of sin, Sivand and Salini believe. But there are a lot of Good Samaritans who backed the couple to the hilt, helping them in their quest to get married– a scenario they thought would never happen in their lives.

Health condition
The main issue LI patients face is the lack of sweat glands. This causes disfiguration of the skin and many other related hazards. Many times, people make their aversion to their looks without an iota of empathy. Sivan and Salini are now used to such manifestations of contempt.

Sivan, who is now making a living by working in a shop, wants to do something of his own. But that is easier said than done. But Sivan and Salini are a happy couple now as they relish the joy of being together.

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