Founder struggles in a never-ending health nightmare

Camp Kulin founder Tanya Dupagne has described living with the tick-borne Lyme disease as a nightmare she never wakes up from. Ms Dupagne, pictured, was raised in Kwinana and is known for her dedication to supporting young people who have been affected by trauma through her Camp Kulin program. She’s been very sick for seven years but was only diagnosed with the disease in November. About 15 years ago, Ms Dupagne was bitten by a tick while working at a camp in the US — now an endemic area for Lyme disease, a bacterial infection usually transmitted to humans from the bite of a tick carrying Borrelia burgdorferi. “Lyme disease is contracted by a tick bite and I had no idea when I first got bitten, the impacts it would have on me,” she said. “The best way to describe it is a bit like living in a nightmare, only you don’t wake up in the end of it. “It’s extremely painful. “I’m in constant pain, I am highly fatigued, it affects every single part of your body and it’s all deteriorating at the same time.” Ms Dupagne also has some of the co-infections acquired with Lyme disease. “I’ve been off work since November 4, but unfortunately I have all the co-infections that go with it as well, which means it’s quite serious,” she said. “I’ve also been diagnosed with chronic fatigue syndrome, fibromyalgia, upper limb dyspraxia, complete foot drop, and posterior tibial tendon dysfunction,which means I need to walk with braces at the moment and I have compression on both arms to try and reduce swelling.” Following the announcement of the Camp Kulin recess, Ms Dupagne said she was unsure of the camp’s future. “At this point, for me, everything is very uncertain. The diseases I have are extremely serious — some of them have quite high fatality rates linked to them,” she said. “At the moment I’m concentrating on my health and getting myself better so that I’m in a position to make decisions in the future about where I can go with different programs and Camp Kulin as well. “I’m much too sick and it’s much too early in my treatment to be able to do that.” As a Lyme Disease Association of Australia ambassador, Ms Dupagne wants urgent action for Australian Lyme disease patients. “It’s very important that we actually recognise the disease exists because we don’t do that in Australia at the moment and that’s one of the biggest challenges that myself and other patients face when we receive treatment, because it’s not readily available in Australia,” she said. Lyme disease is surrounded by debate and controversy in Australia, with many believing the condition does not exist. “I actually got bitten in an endemic area of America, so for me it’s cut and dry, I do have Lyme. I’m not arguing it doesn’t exist in Australian ticks in my case, but because it’s not recognised here, I still can’t get help,” she said. To assist with the extensive cost of treatment, friend Donna Gordin has set up a GoFundMe page with an end goal of $50,000. “The cost of my treatment is astronomical. It’s costing me upwards of $2000 a month for the medication and support I need to get better,” Ms Dupagne said. Ms Dupagne has worked with over 130,000 children across the world and has spent the past 15 years running camp and youth activity programs for at risk children in Australia, America, South Africa and Vietnam. “We are giving kids a sense of family, teaching them life skills that a lot may not have learnt otherwise; things like leadership, respect, trust, self confidence and self esteem and that mentoring relationship between the volunteers and the campers has also been key to making the program a success,” she said. “Making long-term relationships with my first lot of campers, a lot of them being from Narrogin, who came to me when they were eight years old and are now volunteering with us, watching them grow and develop has been amazing for me.” Camp Kulin has helped children from more than 330 towns around WA with families travelling more than 25 hours each way to take part. To help Ms Dupagne fight her health battle, click here.