Rare Disease Day Important To Chronic Pain

February 29 is Rare Disease Day. Did you know that different rare diseases that affect 300 million people worldwide? 34 year Paula Torres lives in Chile who has suffered from chronic pain all of her life. Like many pain patients she has a rare disease which was hard to diagnose. Her is how she described […] View page

Branston teen talks about her battle with four rare diseases

A WOMAN struck down by numerous rare diseases has spoken out about how they ‘changed her life overnight’ in a bid to raise awareness about the conditions. Natice Duncan, from Branston, was 19 when she started having regular seizures, then just five days before turning 21, she tragically lost the use of her legs. She […] View page

Ontario to open clinic for rare Ehlers-Danlos syndrome

On the rarest day of the calendar, Ontario is taking action on a rare disease. Health Minister Eric Hoskins on Monday announced a new clinic for Ehlers-Danlos Syndrome (EDS). “This is the aptly timed Rare Disease Day. It happens once every four years . . . rare as the diseases are,” Hoskins said of it […] View page

Pakenham mum and daughter get home makeover from volunteers

A mum and daughter whose home has become cluttered due to their mobility problems have been helped by volunteers after a fundraising campaign. Jo Cordock and 12-year-old daughter Lydia are unable to do any housework in Pakenham, Suffolk because of chronic pain. A cleaner hired by Ms Cordock realised she could not tackle the job […] View page

Disabled mother in plea for new home in Borehamwood

A family is urgently appealing for help to fund for private housing following the death of the mother’s carer. Lara Croft, from Crown Road, in Borehamwood, has Elders Danlos Syndrome meaning she has severe arthritis in her spine and other joints and her condition has gradually got worse. On Valentine’s Day this year, her husband […] View page

Teen Opens Up About Living With Chronic Illness

Darcey Kelly is only expected to live up to 40 years, but that hasn’t stopped the Hertfordshire, England teen from attending university and pursuing a full personal life. Kelly has the most severe form of Vascular Ehlers-Danlos syndrome (VEDS), a disorder that causes overly flexible joints, weak and stretchy skin as well as a weakened […] View page

New social housing completed on banks of Forth & Clyde Canal

Councillor Frank McAveety, leader of Glasgow City Council, joined tenants of a stylish new affordable housing development on the banks of the Forth and Clyde Canal as they celebrate the start of Queens Cross Housing Association’s 40th anniversary year. A total of 108 homes have been built by the Association at Timber Basin, a historic […] View page

Make-A-Wish arranges for boy to meet his favorite NFL player

Eight year-old Shayden Parkinson’s wish came true on Jan. 3 when he and his family got to fly to Green Bay, Wisconsin, and watch a Packers football game. Local grantors of the Make-A-Wish Foundation, Eileen Peterson and Louise Moser, worked with the Green Bay Packers organization to grant Shayden’s wish. Shayden was born with Ehlers-Danlos […] View page

Taking Painkillers All the Time Doesn’t Make Me an Addict

In our latest episode we talked to Peter Grinspoon, a Harvard doctor who struggled with painkiller addiction, about the dangers of drug abuse. He says drugs – other than marijuana – are evil. Our listener Jen O’Neal strongly disagrees. O’Neal, a 23-year-old college student in Austin, Texas, has Ehlers-Danlos syndrome, which affects connective tissues between […] View page

Spreading Awareness and Hoping for a Cure

When I was 25 I decided to reclaim my life. I left an abusive relationship and worked very hard on my physical and mental health. With diet and exercise, I went from 240 pounds to 180 pounds in about 5 months. I thought losing weight would make me feel better, but as soon as I […] View page