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SUMMER 2024 InTouch | 27 IN MEMORIUM in support of their cancer patients. We need this for Pompe disease, and rare disorders as a whole. Most doctors don’t know what Pompe is, most don’t have time to find out about it, or deal with the more specialised support and treatments that may be available. I’m fortunate that my doctor supports me in whatever I need for my disease. I’ve educated myself, and he trusts me to know what I need for myself. Is there anything you would like to add that would be helpful for people living with the same condition? Find your tribe! Do things that bring you joy! Reach out to New Zealand Pompe Network – http://www.nzpompe. network Reach out to MDANZ to ask what is available to you in your area, and to organise a visit from a fieldworker. Get on Facebook and look for the Pompe groups. There are a lot of them. Get a Medic Alert emblem to wear. I have gone through 2 bracelets, and I find that the words wear off the back. So, I wear the necklace now with no problems. Sometimes you don’t know what you don’t know. You don’t know what questions to ask when you haven’t been down this road before. No question is a stupid question. Ask the experts – the patients! We’re experts at living with Pompe. In Memory of Freda Evans For almost 30 years, Freda had been fighting a health system that knows she was suffering, but wouldn’t acknowledge her illness, or fund the drugs that would slow her deterioration. “I’ve walked the road to Parliament five times, I’ve protested, and I’ve pleaded for my life, but they don’t listen. They just escort me out of Parliament” Freda said. Freda was diagnosed with late-onset Pompe disease in her early 30s, a genetic condition with no cure. However more than 75 countries fund a drug that was developed 15 years ago to improve lung function, muscle strength and quality of life for sufferers of this disease. Freda advocated endlessly for herself and other members with Pompe for this drug to no avail. She shared her brave story in 2021 with The Medicine Gap: www.themedicinegap.co.nz/voices/ freda-pompe-disease Freda sadly passed away in June 2024 after a brave battle with Pompe disease. Photos: themedicinegap.co.nz Sign the petition calling for Te Whatu Ora | Health NZ to urgently engage with Rare Disorders NZ and develop an implementation plan for the Rare Disorders Strategy. https://tinyurl.com/56rcp5yv