HALIFAX – A Halifax woman suffering from a rare disorder is speaking out so others can learn more about life with the condition.
Donna Coleman, 59, was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) last October. CIPD is a chronic autoimmune disorder that damages the myelin sheath, the insulation around nerves, which leads to weakness and paralysis.
Her journey to CIPD began a few months earlier when she started to lose feeling in her left leg. Doctors thought Coleman might have had a stroke so she began doing physiotherapy.
However, shortly afterward Coleman collapsed while at home.
“My legs, arms, nothing would work. I couldn’t do [anything],” she said.
Coleman’s daughter Amanda, who took her to the doctor and eventually the emergency room. She was placed into an induced coma for almost three weeks while doctors tried to figure out what was going on in her body.
Doctors first diagnosed her with Guillain-Barre Syndrome (GBS), a disorder where the body’s immune system attacks the nervous system. Symptoms include weakness and numbness in the arms and legs. GBS can even lead to paralysis.
“I couldn’t move nothing at first, not anything. I had no muscles to help me,” she said.
Coleman became confined to a wheelchair because she couldn’t use her legs and had difficulty in moving her fingers and regaining strength in her arms and torso.
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GBS is rare, according to Dr. Ian Grant, a neurologist with Capital Health and an associate professor of medicine at Dalhousie University.
Grant said between 10 and 20 people in Nova Scotia are diagnosed with GBS every year. He adds that the risk is greatest for people older than 50.
Fortunately GBS is temporary, and patients are able to recover with time though they may suffer long-lasting effects of the disorder.
Coleman thought she was on the road to recovery and was re-learning to walk when her doctors revised her diagnosis to CIPD.
Grant said both conditions can be caused by abnormalities in the immune system and can sometimes be triggered by exposure to an infection that causes the immune system to go haywire. CIPD is even rarer than GBS and is persistent and constant whereas GBS is often short-lived.
“Awful. Heartbreaking in a way. [I’m left] Wondering why you have to go through all this [only to] find out it can happen again,” she said about her revised diagnosis while holding back tears.
“It’s such a change on your life, your whole life. You can’t do nothing.”
“Weakness is the main problem. In some people, it’s fairly easy to control. In other people, the weakness can be severe and hard to control,” said Grant.
“Most people though can have their disorder brought under pretty good control eventually with one or more different types of treatment that modify the immune system.”
While Coleman dealt with her shock, her family pushed her to continue with her physiotherapy. Daughter Amanda Newton said the diagnosis has taken a toll on the family.
“It’s hard,” Newton said, trying to stay composed.
“At Christmas time, she was able to move her leg, the leg that was dead that she couldn’t get any feeling in,” said son Kevin Coleman.
“We thought we had a Christmas miracle. We thought she was coming around. It was a little bit of false hope.”
The family is also struggling financially. Coleman wants to go home but her house is not wheelchair accessible. Friends and family are raising money through GoFundMe to build a ramp into her house and raise money for a wheelchair. They estimate the renovations will cost approximately $50,000.
Coleman said she wants people to know more about both GBS and CIPD, and she hopes sharing her story will help.
“They have to know more about this disease. There has to be more out there,” she said.
Grant said there is little people can do to prevent CIPD except become aware.
“It’s not a preventable disease. I think the take home point is to understand that patients who have it do have a chronic condition that can be fairly debilitating and they need supports from their doctors, physiotherapists and the community they live in.”
In the meantime, Coleman is determined to get her life back and walk again.
“I’m trying to get through it. I’m going to make it.”
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