Histiocytosis: A Voice That Needs To Be Heard

For the past three years DCU’s Media Production Society has organised a charity 24 Hour Broadcast in conjunction with Bank of Ireland. The broadcast, which can be viewed online, raises funds for a charity of its choice last year being the Make a Wish Foundation.

This year the cause is a lot closer to home, as the proceeds of the 2014 event are going towards raising awareness and research for Histiocytosis, a disease that one of our fellow students battles on a daily basis.

Niamh Ni Ruari, 21, was diagnosed with Langerhans Cell Histiocytosis, a rare illness that affects one in 200,000 children, when she was just three years old. The condition left her with Diabetes Insipdus, which is a lack of the hormone ADH in the body, and although it causes overwhelming thirst and an excessive need to urinate it can be kept under control with medication.

When she was almost fifteen, Niamh learned that the LCH she had been diagnosed with as a child had come back. This time it affected her cerebellum, the part of the brain in charge of mobility and co-ordination, and she had to endure some major life-altering changes. Now she depends on a wheelchair for mobility.

“It affected me hugely when I was fifteen. It started off slowly – through a limp. It was a subtle change but also a vast one. As time progressed, it deteriorated to the point where I now need a wheelchair.”

When asked how she felt about the broadcast being held in aid of this cause, she said: “I feel very privileged, the disease is quite rare, and DCU has taken on both this disease and charity. It’s a chance and opportunity to be heard.”

She believes there needs to be more awareness regarding Histiocytosis and LCH, “I definitely think there needs to be more awareness. Before this broadcast, if you mentioned LCH to anybody, they wouldn’t have heard of it”.

Despite the challenges that life has thrown at her, Niamh remains a deeply determined individual. Her strength in the face of her disease is to be admired by many, and she hopes to be a voice for others suffering with rare degenerative conditions.

She is currently studying journalism, a career path she never thought about taking until she was affected by the disease. She did an introductory course to journalism and then a two year diploma course in Ballyfermot College for Further Education. She was accepted into DCU’s journalism course this year.

“I want to be a journalist to spread awareness about the condition. I only developed an interest in journalism when the disease started affecting my mobility.”

Both Niamh and DCU MPS hope the efforts made in this year’s 24 Hour Broadcast will be the first step in helping further research into curing Histiocytosis and all conditions associated with it.

To find out more about Niamh and her inspiring journey, you can visit her blog: www.myybeautifulnightmare.com

 

Jade O’Leary

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