Maddie

This is Maddie. At 14, she began enduring unexplained hip pain. Despite countless tests, including x-rays and physiotherapy, answers remained elusive. Eventually, she stumbled upon Ehlers-Danlos Syndrome (EDS), but her GP dismissed it after more tests.

Over the years, her pain spread to her knees, shoulders, hands, and ankles. In 2021, Maddie was diagnosed with fibromyalgia and chronic fatigue syndrome. Maddie tried various treatments but found she wasn't getting any of the expected relief for these conditions.

Frustrated, she joined fibromyalgia support groups, suspecting more was at play. She sought a new GP's help and pushed for an EDS specialist. It came at a high cost, but Maddie's determination led to a diagnosis of hypermobile EDS in 2022, followed by Postural Orthostatic Tachycardia Syndrome (POTS).

Her health challenges grew with endometriosis, PCOS, chronic fatigue/ME, and a mysterious gastrointestinal issue. Public gastroenterologists brushed off her symptoms as irritable bowel syndrome, despite her abdominal pain, constant nausea, vomiting, bloating and weight loss. All of this has put Maddie's life on hold.

With some luck, she met with a vascular surgeon, who explained abdominal vascular compression syndrome and everything started falling into place. Maddie will require tests and scans to determine the next steps in her treatment plan, but they are financially out of reach.

Kiwis Together wants to get Maddie her life back to what it was - a dedicated student and musician. We will do what we can to help. But you know that doesn't happen with your support and all we need is $1 a week.

This story is becoming all too common. We want to change the narrative and give Kiwis access to the healthcare they need.