{"id":36878,"date":"2025-09-22T15:33:09","date_gmt":"2025-09-22T15:33:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/36878\/"},"modified":"2025-09-22T15:33:09","modified_gmt":"2025-09-22T15:33:09","slug":"northland-teen-with-rare-brain-condition-goes-from-patient-to-podcaster","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/36878\/","title":{"rendered":"Northland teen with rare brain condition goes from patient to podcaster"},"content":{"rendered":"

Kelly\u2019s GP referred her to an emergency ophthalmologist at Whang\u0101rei Hospital<\/a>, who noticed severe swelling on her optic nerve and optic disc – the spot where the optic nerve enters the eye.<\/p>\n

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.<\/p>\n

\u201cI had a lot of pressure on the back of my eyes and that almost caused me to go blind<\/a>,\u201d she said.<\/p>\n

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.<\/p>\n

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<\/a>.<\/p>\n

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

In January this year she relapsed, admitting she had become unwell over Christmas but didn\u2019t want to go to the doctor over the holiday period.<\/p>\n

\"DeeDee Kelly’s fledgling podcast Not Just a Headache – with Dee is available on Spotify to help raise awareness of IIH and connect patients.<\/p>\n

Kelly said while medications can help, they are often more about protecting eyesight than treating the condition. <\/p>\n

\u201cWhen I was first diagnosed, I couldn\u2019t do PE or play outside with friends. It\u2019s definitely quite restricting – you miss out on a lot of things.\u201d<\/p>\n

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

\u201cYou get lots of side effects and I found the side effects worse than the illness itself.\u201d<\/p>\n

In July, Kelly started her podcast<\/a> Not Just a Headache – with Dee to raise awareness and share information about IIH.<\/p>\n

\u201cThis illness feels really isolating and you feel quite alone as only one in 100,000 people have it.<\/p>\n

\u201cI wanted to create a space where people could share their stories and connect with other people with IIH.\u201d<\/p>\n

\"Dionne-MayeDionne-Maye “Dee” Kelly says having a rare condition is isolating and often hard to explain.<\/p>\n

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.<\/p>\n

September is International Idiopathic Intracranial Hypertension Awareness Month. <\/p>\n

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.<\/p>\n

\u201cThe one thing I want people to know about IIH is it\u2019s not just a headache – it can affect your vision, mobility and mental health.<\/p>\n

\u201cEven though it\u2019s invisible, it\u2019s very real and people need support.\u201d<\/p>\n

As she explained in her podcast: \u201cYou look normal but inside, your brain is screaming\u201d.<\/p>\n

Kelly also wants to increase health professionals\u2019 awareness of IIH, after seeing some doctors Googling the condition while she was in the emergency department.<\/p>\n

\u201cIf more doctors understand it, I feel like patients would get better care and diagnosis.\u201d<\/p>\n

Kelly\u2019s experience with the health system has not been all bad though, as she now wants to study nursing.<\/p>\n

\u201cBeing 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.\u201d <\/p>\n

The podcast Not Just a Headache – with Dee is available on Spotify.<\/p>\n

Denise Piper is a news reporter<\/a> 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.<\/p>\n","protected":false},"excerpt":{"rendered":"Kelly\u2019s GP referred her to an emergency ophthalmologist at Whang\u0101rei Hospital, who noticed severe swelling on her optic…\n","protected":false},"author":2,"featured_media":36879,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[34084,1558,1596,138,1239,8449,71,5275,5838,14607,424,111,139,1067,69,1597,6293,3800,29806,8205,11555,5163,4054,61,17454,102],"class_list":["post-36878","post","type-post","status-publish","format-standard","has-post-thumbnail","category-business","tag-altered","tag-been","tag-brain","tag-business","tag-condition","tag-ease","tag-from","tag-goes","tag-help","tag-isolation","tag-life","tag-new-zealand","tag-newzealand","tag-northland","tag-nz","tag-patient","tag-patients","tag-podcast","tag-podcaster","tag-rare","tag-started","tag-teen","tag-teenager","tag-to","tag-whose","tag-with"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/36878","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=36878"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/36878\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/36879"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=36878"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=36878"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=36878"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}