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Could these twins’ rare genetic disorder provide the key to preventing cancer?

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For those born with Laron, there is hope in the form of a drug called Increlex.

The medication, which was first developed 15 years ago, can result in increased height if administered during growth spurts.

But accessing the drug can be difficult and it has several limitations – it can only be given to children between the ages of two and 18 and in some cases has serious side effects.

It can cost more than $800 (£600) per bottle, as it is only produced by one pharmaceutical company.  A child with Laron syndrome needs at least three bottles per month, costing $2,400, Dr Guevara explains.

One of those struggling to get hold of the drug is Mayra Loaiza.

Her two-year-old daughter, Camila,  was supposed to start her treatment six months ago, but still has not received her first dose.

Mayra, who also lives in Piñas, worries how this could affect Camila’s growth.

“I want my daughter to have as normal a life as possible. I don’t want her to be discriminated against because of her size,” she says, adding that she is confident the drug will boost Camila’s height.

Twins María Luisa and María del Cisne, who are 40, are among those who missed the window for taking the drug.

While they wonder how different their lives might have been had it been available in their youth, they say they have learned to live with their short stature.

“We now accept ourselves as we are, but the treatment would have saved us a lot of heartache,” says María Luisa.

“I’ve accepted myself as I am, I accept myself, and I thank God for who I am.”


BBC News

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