what it feels like: 'you don’t know what your future holds' living with cidp
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with intravenous immunoglobulin (ivig) therapy, a treatment that utilizes antibodies from donors to prevent the immune system from causing further damage to the nerves, darryl bedford can live a relatively normal life with cidp.
darryl bedford
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before darryl bedford was diagnosed with chronic inflammatory demyelinating polyneuropathy (cidp), a rare neurological autoimmune disorder that causes damage to the covering of the peripheral nerves, he lived a “fairly normal” life. he was a college teacher with no health issues, and his life was “going quite well.”
around age 34, darryl began experiencing numbness and tingling in his feet, a feeling he equates to limbs when they fall asleep. however, the symptoms couldn’t be shaken off, and eventually, the numbness and tingling never disappeared.
as the symptoms progressed into his fingertips, hands, and eventually up his arms on both sides of his body, he began losing motor control.
“it was harder to turn the key in the car’s ignition or open a bottle cap or undo or do up a button,” he said. “eventually, my legs started to get stiffer and stiffer to the point where it was much more difficult to walk.”
darryl notes that activities that would have taken him five minutes to accomplish prior to the onset of his symptoms took three times as long. he lost the ability to run altogether and felt unsteady on his feet, as if his body was falling forward. he also couldn’t ice skate anymore, and his reflexes had all but disappeared.
he went to his doctor, who immediately referred him to a neurologist at the london health sciences centre for investigation. they ruled out other conditions that presented similarly to cidp, and eventually, a technician running a nerve conduction test told darryl they’d seen the pattern in the results before.
“it took a long time to diagnose, although i learned later that i got my diagnosis sooner than most people do,” said darryl. “fortunately, my doctor believed me. he believed my symptoms.”
after all was said and done, it took just under a year between the time darryl started experiencing treatments and when he was given medication to manage the disease.
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dealing with the emotional impact of a chronic disease
when darryl received his diagnosis, he was more relieved than anything. still, he admits to being unprepared for the “lifetime journey” he was forced to embark on with cidp because he wasn’t expecting to be dealing with a chronic disease so young, and he, like many others, had never heard of cidp.
the disease is rare, with roughly five-to-seven cases per 100,000 people in the canadian population. even with an air of relief, dealing with the mental impact of a new chronic disease isn’t easy.
“you take a lot of things for granted. being able to undo the button on your jeans or being able to open jars, so this is what was so frustrating for me at times where i was at my worst or where i had relapses,” he said.
he recalls losing independence and, at some points, being unable to drive his car because while he could use the pedals just fine, turning the key in the ignition or pushing the button on the gear shift was a two-handed job.
however, what bothered darryl the most was that cidp was essentially an invisible disease.
“even during some of my most difficult days, the average person wouldn’t be able to see that there’s anything wrong with me. that’s a real struggle,” he said. “you’re facing this decline. you don’t know what your future holds.”
he continued, “i’m reminded of everything i went through, and there were certainly people around me who did not understand,” he said. “but it did have quite an effect on me mentally.”
during the time he was dealing with his diagnosis, darryl had also received a layoff notice from his work and found out he was going to be a father—all of which, both good and bad, became the basis for a new life.
“a lot of things happened in fairly quick succession,” he said.
‘a world of difference’: how cidp treatment brought back abilities
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when darryl’s neurologist was able to give him a proper diagnosis, she was relieved—a feeling darryl didn’t quite understand at the time. but afterward, he recalls that it was because cidp is highly treatable, unlike many other conditions that mimic the same ailments.
as his symptoms worsened and he began to get frustrated with his mobility issues, his mind was plagued with worries about the future he was going to have for himself.
darryl was concerned about where his career would go, what the condition would do to him over time, and especially if he would be able to show up for his son.
he was then given intravenous immunoglobulin (ivig) therapy, a treatment that utilizes antibodies from donors to prevent the immune system from causing further damage to the nerves.
“it made a world of difference,” said darryl when recalling his first treatment. “i already started to feel better within two weeks. the numbness and tingling was pretty much gone, and then just slowly, gradually, over the months that followed, my walking got better and better, and my functions all started to come back.”
darryl calls his remission “remarkable” because he could do everything he did before, like run or ice skate.
however, since cidp is a chronic disease, one treatment only goes so far. darryl experienced several relapses over the years and is now a regular recipient of ivig so that he can continue to live his life with no or relatively low impact.
“i’m able to go once every six weeks, so i’m probably on the more positive outcome side,” he said. “but if i go too long without immunoglobulin, that’s when i can start to feel the tingling and other symptoms come back.”
a newer treatment, hyqvia, was recently approved by health canada and is giving people like darryl more options for remission. it’s a similar form of immunoglobulin treatment, but it’s administered subcutaneously instead of intravenously. it can be self-administered once per month, giving people living with cidp more freedom while living with the chronic disease.
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“it’s really encouraging to have other options available, not just to me, but to other patients like me,” he said. “the freedom to be able to choose a treatment option that works best for you and just having one more good option available, that’s really encouraging.”
pivoting in life to accommodate chronic disease treatment
while darryl is grateful for the “miracle drug” ivig, his life is not the same as it would have been if he weren’t diagnosed with cidp. for instance, his ability to get life insurance is now a headache in and of itself. he is either turned down for coverage altogether or charged an obscene amount of premiums because of his condition.
darryl also has to stick to a tight schedule to ensure that he gets his treatments at the proper intervals. if he doesn’t, the symptoms and all the issues that accompany them will return.
he can’t leave the country or even the province for too long when treatment is coming up because he knows firsthand what happens if he doesn’t get it on time.
“it really does change the rhythm of your life,” he said.
darryl also has to schedule his life around his intravenous therapy sessions because of how they affect him physically. while ivig keeps symptoms at bay, side effects, including fatigue and headaches, can “put that disruption in the middle” of his life—something he had to learn to accept.
“but i’m grateful because just by doing this, this gives me a quality of life,” he said. “i do quite well.”
a changed perspective because of cidp
darryl understands how lonely it can be to face a chronic disease, so he is “very active in the patient community.” he has also become a voice for cidp in his workplace to ensure that people living with these types of diseases don’t have to go through the same struggles he faced when it came to potential job loss.
he acknowledges that each patient has a different journey, but when he connects with others on the same cidp path, “there’s a lot of commonality there” that he leans on to remind himself of where he once was and how far he has come.
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“i can come out of that feeling quite grateful for the situation that i have and what treatments allowed me to do,” he said. “but it also allows me to reassure somebody that they’re not alone … we all feel very alone, and 20 years ago, there weren’t the patients and supports like there are now. i didn’t know anybody else with this condition, and under normal circumstances, you would never meet anybody else with this condition.”
his goal when meeting and speaking with others living with cidp is to help them walk away feeling reassured and less like they’re facing cidp without anyone to support them.
while some bad things have come out of his experience, such as relationship loss and changes, being misunderstood by those closest to him, and feeling low self-worth and inadequate for the things he couldn’t do, he still continues to practice gratitude for the people he has in his life.
darryl has an excellent relationship with his son, who goes to charity events with him and understands what his father goes through now that he’s a young adult. he continues to create a community for himself and others living with cidp, and he looks for the silver lining in his experience because, 20 years ago, he could have just thrown in the towel.
“i’ve persisted, and that’s helped me realize i’m stronger than i thought. i survived that, and i’m still here.”
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