Plasma Treatment & CIDP
Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Multifocal Motor Neuropathy (MMN) are three rare but debilitating peripheral nerve diseases, meaning the nerves outside of the brain and spinal cord are damaged. People who have GBS experience a sudden, acute paralysis that may require a stay in the ICU with a ventilator. CIDP and MMN results in debilitating weakness in arms, legs, hands, feet, etc. that can greatly disrupt everyday life for a person living with one of the conditions. Luckily, all three of these conditions are generally treatable for most people with immunoglobulin. There is one flaw; the supply of medicine to treat these conditions relies on the kindness of others. Immunoglobulin, given intravenously (IVIG) or subcutaneously (SCIG), is created from source plasma that comes from healthy people who donate their plasma.
The immunoglobulin treatment is often referred to as “lifesaving” by people with CIDP, attributing a return to their normal lives because of the treatment. Corbin, who is living with CIDP in North Carolina, shared an essay on his “ordinary day” that was only made possible because of immunoglobulin treatment and expressed his concern of what his life might be like without the treatment.
A recent Wall Street Journal article brought attention to a current situation that may put strain on the source plasma supply. Source plasma donated from healthy volunteers is the key to creating immunoglobulin medicine to treat GBS, CIDP, and MMN but the article has rightfully pointed out a severe decline in the supply of source plasma since the pandemic began and potentially exacerbated now by a policy banning Mexicans from coming to the US to donate plasma. Worryingly, patients may very soon start suffering from this drop in plasma donations. If there isn’t enough plasma to make the immunoglobulin medicines, there eventually won’t be enough medicine to treat people living with these peripheral nerve conditions (and other conditions, such as Primary Immunodeficiencies).
“Immunoglobulin treatment saved me in so many ways. I can now work, hike, and live a semi-normal life, but relying on other humans to provide plasma for immunoglobulin therapy is so humbling. I do worry about shortages happening. A shortage means I may have to switch medications or go without, causing huge regression. However, the selflessness of plasma donors encourages me to give back when and how I can.” -Angela P., CIDP patient
“My IVIG treatment allows me to live a fulfilling life. An immunoglobulin shortage is the biggest threat to my independence and mobility. Without Immunoglobulin, I would be in a wheelchair requiring full time assistance in my daily living. I would no longer be able to be a productive member of society.” –Julie B., CIDP patient
“One treatment of Immunoglobulin each week makes all the difference in the world for me. But that one treatment is dependent upon the generous and steadfast commitment made all over the world by Plasma donors who selfishly provide unwavering support for me and the CIDP community. Their amazing gift of plasma transforms my day from an extraordinarily difficult day, into just another ordinary Tuesday. And I am eternally grateful.”–Corbin W., CIDP Patient
The GBS|CIDP Foundation International joins Angela, Julie, and Corbin (more on Corbin’s story below) in thanking all past and current plasma donors for the selfless donation which has created lifesaving medicines for so many people. We remain hopeful for a future where this medicine is readily available thanks to the kindness and generosity of plasma donors. If you are interested in becoming a plasma donor, you can learn more at donatingplasma.org. Plasma donors may be reimbursed for their time.
My Extraordinarily Ordinary Tuesday
By Corbin Whittington
The extraordinary ways that immunoglobulin saves me every day, may seem ordinary to you…=
Its Tuesday morning, the last week in February, and here in North Carolina. Spring is just around the corner. Its 7:00am and I’m already up and rummaging through my garage, collecting my garden stuff in preparation for the first lawn treatment of the season. I grab my fertilizer spreader, carry it to the back yard, come back and grab a 25Lb bag of Weed & Feed and likewise carry it to the back yard. Finally, I return for a rake and my hedge shears to also trim my rose garden while I’m at it. I need to get moving because it’s supposed to rain in about two hours so no time to waste.
I tear open the bag, hoist it up about waist high and begin pouring the dusty pellets into the spreader. I stop when the bin is full and proceed to hustle my way back and forth across the yard spreading the mixture in a nice, neat pattern as I go back and forth, up one side, down the other. I repeat this process three times until the lawn is all covered. Now it’s time to get at these rose bushes.
Two hours later, happy that I beat the rain, I’m all done. I head inside to quickly shower and shave before heading out to the grocery store. I promised my wife that I’d pick up a few things and a case of water today. I’ve still got to hustle because this afternoon I’m appearing as a guest speaker for a virtual workshop on Zoom at 1:00 and I still need to get my laptop and video light set up at my desk in preparation for my lecture.
I arrive at the grocer to a pretty full parking lot, it’s senior discount day so spots are sparse. I park in the back, hike up to the store, grab my cart, and hurriedly collect what’s on my list. I quickly return home, unload the car, and put away the goods with time to spare. So, I sit down and enjoy a cup of coffee, and review my notes before my Zoom event begins. It’s raining now, but another beautiful day for me here in North Carolina. Thanks to my Immunoglobulin Treatment on Sunday, this Tuesday is just another ordinary day that I was able to conquer the extraordinarily debilitating effects of CIDP.
You see if today Tuesday, had been Saturday, I would not have been able to awake so easily. My fatigue would have been overwhelming and kept in bed much later. Lifting a 25Lb bag (if at all) and carrying a bunch of yard tools would have left me far too exhausted to do the work for which they were intended. And trimming the rose bushes would have to wait until I regained enough strength later the next day. The quick dash to the grocery store would have been an event fraught with lifting hazards and wobbly legs trying to navigate the maze of a grocery store. And my guest lecture would have been preceded with several cups of coffee just to ward of the fatigue of the day.
One treatment of Immunoglobulin each week makes all the difference in the world for me. But that one treatment is dependent upon the generous and steadfast commitment made all over the world by Plasma donors who selfishly provide unwavering support for me and the CIDP community. Their amazing gift of plasma transforms my day from and extraordinarily difficult day, into just another ordinary Tuesday. And I am eternally grateful.
