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There was a single step in Richard Habel’s vacation home in Morocco — between his bedroom and bathroom. And every morning, as he got up to start his day, that step seemed to grow a little taller.
It was 2019 and Richard was in his late fifties and highly active, both physically and professionally. Seventeen years after founding a successful company that helped revolutionize the inspection of transport infrastructure across 45 countries, he was still serving as its CEO. He travelled the world with his wife, Sanâa, immersing himself in new cultures and savouring great food and fine wine. At home in Quebec City, he played tennis and squash each week before returning to his beautiful condominium overlooking the Plains of Abraham. His life felt full — vibrant, even — and he never thought of himself as old… except, perhaps, when climbing that one step.
Soon, though, that step began to show up everywhere. “I started to feel tired all the time,” Richard says. “I started to fall for no reason while playing tennis. I found myself needing to work from home because some days I could hardly walk. I went in to see my GP and, through my persistence, was eventually sent to a specialist. The neurologist took a small reflex hammer to my knee. ‘Oh, wow, no reflex.’ I think she immediately knew what was going on. I had CIDP. My own immune system was essentially attacking my nerves.”
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A serious, progressive disease
Chronic inflammatory demyelinating polyneuropathy, or CIDP, is a rare autoimmune disease in which the body’s immune cells damage the myelin that insulates the neurons of the peripheral nervous system. It’s a chronic, episodic, and progressive disease, meaning symptoms may worsen and improve in cycles. But, without treatment, the trajectory of the disease is generally downhill toward greater and greater disability as nerve damage accumulates.
“CIDP can affect anyone of any age,” says Dr. Anita Florendo-Cumbermack, a neurologist at London Health Sciences Centre. “But around the fifth and sixth decades of life is when we see it most. The majority of patients see a slow progression, over weeks or months, from the development of tingling in the hands and feet to balance issues and weakness in the legs and arms. They’ll start having trouble with stairs, trouble getting up from a chair, trouble walking even on level ground, and difficulties with tasks that require fine movement of the fingers.”
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Because CIDP is a rare condition, it flies under the radar of most family doctors. Many will have never seen a case of CIDP in their career, and early symptoms can easily be mistaken for conditions like carpal tunnel syndrome or idiopathic neuropathy. These diagnostic delays can have dire consequences.
“Early diagnosis and monitoring are so important,” Dr. Florendo-Cumbermack says. “Not everyone needs treatment right away, but we need to be watching for the moment when they do. We have good treatments for this condition, most of which are blood-derived products, and there’s a lot of research momentum toward new classes of therapies. A large portion of the worst symptoms are often reversible with early treatment. When patients go undiagnosed and untreated, though, the damage can progress from the insulation to the actual wiring portion of the nerve, leading to irreversible disability.”
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On the ropes
Richard began first-line treatment in February of 2020 and was confident he was going to bounce back quickly. “I figured it was actually a really good time to be sick,” he says. “Suddenly everybody was working from home, so I wasn’t missing much. By the time the pandemic was over, I’d be back to the office with everyone else. I’d be back on the tennis court.”
Unfortunately, that’s not how it turned out. On treatment, Richard’s symptoms only got worse. Pain began to radiate through his arms, his legs, his hands, his feet. He needed Sanâa’s help to get from the bed to the bathroom. He started having to drink through a straw, as he was no longer able to lift a glass to his lips. By May, it was clear that he needed to be hospitalized. “I wrote a new will before I went to the hospital and hit send,” Richard says. “I honestly didn’t know if I’d ever leave that building.”
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The hidden impacts of chronic illness
According to Donna Hartlen, Executive Director of the GBS/CIDP Foundation of Canada, cases like Richard’s are all too common. “In the context of CIDP being a rare disease, we’re fortunate that this condition is treatable,” acknowledges Hartlen. “But the reality is that the treatments that are readily available don’t work for everyone. Even patients who respond to treatment can face a lot of side effects and may not reach their full potential for recovery. I think every patient deserves the best quality of life they can get. Everyone deserves to remain free of avoidable disability.”
Hartlen’s own journey with CIDP began in 2009 when she was 39 years old with two kids under the age of 5. Even now, when her disease flares, she finds herself completely immobilized, essentially quadriplegic, which she knows has been traumatic for her husband and children. And, though treatment has helped her recover each time, she never knows how much function she’ll regain. “A lot of people, especially those who work physically demanding jobs, are never able to return to work after the weakness and numbness begins,” she says. “People become isolated from their social circles, because they can never plan around their illness. They develop mental health challenges and struggle to maintain even their most cherished relationships. It’s a very real thing.”
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It takes a village
After two hospitalizations and multiple failed treatments, Richard felt like he was at the bottom of a hole with no way to climb out. He’d founded another company from his hospital bed, because work was the only thing that could reliably distract him from the debilitating neuropathic pain. But even operating a laptop was getting difficult. He now needed Sanâa’s help to do almost anything. Sanâa never tired of supporting and caring for Richard, but the worry was eating her alive. The muscles on Richard’s once athletic frame had melted away to almost nothing.
“It would have been easy at that point to give up, if it weren’t for Sanâa,” Richard recalls. “And for my friend Marc, who forced me back to the gym. I was using a walker by that point. We got to the gym that first time and after five minutes I was begging Marc to take me home. I was spent. Fine, he told me, but we’re doing this again in two days. And we did, again and again and again until, very slowly, I started to rebuild some muscles.”
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More options, better outcomes
With Sanâa and Marc in his corner, Richard found the strength for the long fight toward recovery. He’s on a treatment that has stabilized him for the time being, though it tends to knock him flat for two days every time.
Today, Richard says stairs still sometimes seem a bit higher than they used to, but barely a day goes by that he isn’t back out on the tennis or squash court. He’s working exactly as much as he wants to, which is still quite a lot for a man notionally in retirement. He and Sanâa are reacclimatizing to life in Canada following their latest month-long journey to Dubai. But Richard doesn’t sugar-coat how hard the climb out of that hole was. And he fears he may not be able to do it again. He’s adamant about the importance of continued research into new CIDP treatments, and of these innovations being accessible early in one’s journey.
“I consider myself very lucky, because I know a lot of people with CIDP never get their lives back the way I have,” Richard says. “But I’m also terrified that this disease could come back even worse. Like many people living with CIDP, I had to go through so many different types of treatments before something worked. I just hope that, soon, neurologists will have an even better toolbox.”
If you or someone you love is living with chronic inflammatory demyelinating polyneuropathy (CIDP), connecting with the right care team is essential. A neuromuscular specialist can help guide personalized disease management and support better outcomes.
Because CIDP is a rare condition, it can sometimes feel isolating—but you’re not alone. Finding a supportive community can make a meaningful difference for patients and families alike.
To access trusted information, resources, and a strong support network, consider connecting with the GBS/CIDP Foundation of Canada.
Made possible with support from argenx.
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