DCSIMG

Don’t be ignorant, about a condition without a cure

Lucie Vengi has Episodic Ataxia type 2

Lucie Vengi has Episodic Ataxia type 2

A woman who would suffer panic attacks when she got excited about her birthday, says she will not let the condition hinder her as she bids to become an actress.

The rare incurable condition causes Aylesbury’s Lucie Vengi to lose coordination, feel sick and suffer pains in her body when she gets excited, anxious or undertakes physical activity.

She spent years waiting for doctors to figure out what was wrong, and did not make it through a birthday party without debilitating symptoms until she was 10.

The 25 year old, who grew up in Middlesex but moved to the Vale two years ago, said: “During school I wasn’t allowed to do sports or attend swimming lessons as this would set off an attack.

“The other students would often not believe me and make fun of me. Even the teachers were sceptical at times as I would be in and out of the medical room so often.

“I had many incidents due to my condition, I have collapsed in the street unable to move my legs whilst on my way to work.

“I have been shouted at in the street when I was just having a bad attack because people thought I was drunk.”

Despite the incidents, Miss Vengi says: “I have always tried never to let this define who I am and to live a relatively normal life.”

She was diagnosed with Episodic Ataxia Type 2 at age 13 and is currently taking Diamox to help control it, after trying experimental drugs.

After moving to Aylesbury she gained a BTEC level three in performing arts at Aylesbury College and career wise she aims to become a TV actor.

Whilst growing up she tried to hide the condition from the people she met, because she felt ashamed of it.

During last month’s Ataxia Awareness Day she decided to speak out about her experiences, after seeing internet posts from other sufferers and thinking ‘I should be making more people aware not hiding it’.

Since then she has also taken the brave decision to undertake a sky dive for the Ataxi UK charity.

She said: “I know this may bring on an attack, which I am worried about, but I am trying desperately to raise awareness and money for this very little known condition.”

The sky dive will take place in December and she aims to raise £500 for the charity.

For more details about Lucie and to support her visit www.justgiving.com/Lucie-Vengi

 

Comments

 
 

Back to the top of the page