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Rare condition turns girl's organs into crystal

Lena Forsyth from Mintlaw suffers from Cystinosis, a rare and deadly disease which is destroying and killing the healthy cells in her body.

Rare condition turns girl's organs into crystal

A young north-east girl is battling an incurable condition which could slowly turn her organs into crystal.

Lena Forsyth from Mintlaw suffers from Cystinosis, a rare and deadly disease which is destroying and killing the healthy cells in her body.

Now her family are hoping to raise funds to improve research into the condition.

The youngster is one of just 2,000 people in the world who suffer from the rare condition. She was diagnosed with Cystinosis when she was seven months old.

The condition, which can strike any organ, causes a build up of crystals in the eyes – resulting in an increased sensitivity to light. Without treatment, kidney failure is common by the age of ten.

Lena's Mum Vicky Forsyth said: “Obviously with it being so rare, it was very upsetting when we found out what it was.

“But at least we knew afterwards that we could treat the condition and make her feel a bit better in herself.”

Lena's family say the main drug used to limit the damage to her organs, Cystagon, has an unpleasant taste and smell and regularly makes her feel ill.

Although there is no known cure, they are hoping to fund research to improve the medication for her and other sufferers, so they can take lower doses less often.

Vicky added: “We’re trying to fundraise so the Cystinosis Foundation can support two research projects – one to improve the taste and the smell so sufferers are more willing to take the medication.

“The other one is so that they won’t have to take as many doses during the day.”

When outside Lena must wear a baseball cap to protect her eyes and is forced to stay indoors in warm weather to stop her body overheating. In addition to this she must take drugs through a tube five times a day.

Her family say she never complains and are hoping that, despite her condition, early diagnosis means she will continue to lead a full and happy life.

For more information on Cystinosis and to learn more of Lena's family's fundraising efforts click here.
 

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