Katoomba’s Josie Eldred Downes is a typical 21-year-old who enjoys studying, listening to the latest dubstep tracks and watching TV series like Californication and Dr Who.
But unlike her peers, Josie must cope daily with the debilitating effects of a rare medical condition.
Josie has Myalgic Encephalomyelitis (ME) — a chronic disease sometimes mistaken for Chronic Fatigue Syndrome — which can cause a wide range of painful symptoms and for which there is currently no cure.
She was diagnosed at 13 after a respiratory infection was followed by unexplained and ongoing bouts of muscular and joint pain, headache, fever, nausea, shortness of breath, sensitivity to light and depression.
While some days are better than others, Josie has been predominantly bed bound for the last seven years and despite seeing dozens of specialists and trying scores of medications, none have been effective.
“You go through so many emotions dealing with an illness like this, it’s almost too much for one person to handle sometimes,” she said.
But there is fresh hope for Josie’s future after her mother and carer, Jayne, discovered a treatment offered in Hawaii that is proving very effective in raising the quality of life of ME patients.
In order to pursue this treatment, which requires six weeks of therapy in Hawaii, Josie’s family has set up a fund-raising and information site on Facebook with the aim of raising $18,000 needed to make the trip.
“We started a month ago and already we’ve reached the $3000 mark which has been really heartening with individuals and friends making amazing donations and even total strangers who visited the Facebook site making donations,” Josie said.
“I recently spoke to Dr [Jamie] Deckhoff-Jones on the phone and I’ve read about the success of her treatments — she certainly inspires confidence.
“While there is no cure for ME, this treatment gives me hope for a better quality of life, a better social life, a chance to do more studies and eventually be able to be in a position to work — to basically get my life back.”
Josie was recently well enough to enjoy a special evening with close friends to celebrate her 21st birthday and despite having to deal with disabilities most of us cannot imagine, she is halfway through a Bachelor of Media Communications course by correspondence through Charles Sturt University.
She also recently set up her own photography website.
“If I’m feeling okay I like to get my SLR camera out and take interesting shots, but I can only do that for short periods of time.
“I go on Facebook and Skype a fair bit — I’m lucky I have a pretty tight, close-knit group of friends.”
For more information about the fund-raising drive to get Josie to Hawaii for treatment go to www.facebook.com/TurningPointForJosie or phone Jayne Eldred on 0414 695 601.
