Northland teen with rare brain condition goes from patient to podcaster

Dee Kelly, 18, wants people to understand that idiopathic intracranial hypertension (IIH) is not just a headache but a life-long condition that can affect vision, mobility and mental health.

A Northland teenager whose life has been altered by a rare brain condition has started a podcast to help ease patients’ isolation.

Dee Kelly, 18, from Waipu was just 12 when she was diagnosed with idiopathic intracranial hypertension (IIH), a condition where the fluid inside the skull is a higher pressure than normal.

This elevated cerebrospinal fluid puts pressure on the brain, as well as the optic nerve and spinal cord. The main symptom is a headache but, in rare cases, it can cause blindness.

Kelly said she remembers being very unwell, with what was thought to be a headache or migraine.

As the oldest of four children, she was sent to her grandmother’s house for some peace but was rushed to the doctor when her grandmother noticed her holding her head at an odd angle while watching TV.

Kelly’s GP referred her to an emergency ophthalmologist at Whangārei Hospital, who noticed severe swelling on her optic nerve and optic disc - the spot where the optic nerve enters the eye.

An MRI also showed fluid on her brain and she was given a lumbar puncture, which found the pressure of her cerebrospinal fluid was much higher than normal.

“I had a lot of pressure on the back of my eyes and that almost caused me to go blind,” she said.

The lumbar puncture helped relieve some of the dangerously high pressure but Kelly also had to take medications to help keep the pressure at bay.

While 90% of IIH patients are women, and there is a link to hormones and being overweight, the actual causes of the condition are unknown.

For the first two years after being diagnosed, Kelly was in and out of hospital but was fortunate to go into remission for a few years.

In January this year she relapsed, admitting she had become unwell over Christmas but didn’t want to go to the doctor over the holiday period.

Dee Kelly's fledgling podcast Not Just a Headache - with Dee is available on Spotify to help raise awareness of IIH and connect patients.

Kelly said while medications can help, they are often more about protecting eyesight than treating the condition.

“When I was first diagnosed, I couldn’t do PE or play outside with friends. It’s definitely quite restricting - you miss out on a lot of things.”

The medications can also be hard to get right and Kelly said she was lucky enough to only go through two: acetazolamide and topiramate.

“You get lots of side effects and I found the side effects worse than the illness itself.”

In July, Kelly started her podcast Not Just a Headache - with Dee to raise awareness and share information about IIH.

“This illness feels really isolating and you feel quite alone as only one in 100,000 people have it.

“I wanted to create a space where people could share their stories and connect with other people with IIH.”

Dionne-Maye "Dee" Kelly says having a rare condition is isolating and often hard to explain.

While Kelly has chatted with a lot of fellow patients in the US, she hopes the fledgling podcast will find a New Zealand audience, as there is limited support here.

September is International Idiopathic Intracranial Hypertension Awareness Month.

Kelly suspected many of her schoolmates did not fully understand her condition, which often meant she was unable to stay at school for the full day.

“The one thing I want people to know about IIH is it’s not just a headache - it can affect your vision, mobility and mental health.

“Even though it’s invisible, it’s very real and people need support.”

As she explained in her podcast: “You look normal but inside, your brain is screaming”.

Kelly also wants to increase health professionals’ awareness of IIH, after seeing some doctors Googling the condition while she was in the emergency department.

“If more doctors understand it, I feel like patients would get better care and diagnosis.”

Kelly’s experience with the health system has not been all bad though, as she now wants to study nursing.

“Being in the ED or the hospital, the nurses are the people who come and sit by your bed and all were so lovely. I would love to be like that for someone else in my position.”

The podcast Not Just a Headache - with Dee is available on Spotify.

Denise Piper is a news reporter for the Northern Advocate, focusing on health and business. She has more than 20 years in journalism and is passionate about covering stories that make a difference.