KING OF PRUSSIA, PA — The GBS|CIDP Foundation International serves patients living with Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and variants of the condition such as multifocal motor neuropathy (MMN) through support, education, research, and advocacy. GBS, CIDP, and variants such as MMN are rare disorders of the peripheral nerves, and the conditions can cause severe long-term disability if left untreated. Luckily, the conditions are generally treatable with a medicine called immunoglobulin (IG). IG can be given intravenously (IVIG) or subcutaneously (SCIG). IG therapy is created from source plasma donations, meaning the community relies on healthy people to donate their plasma in order for their medicines to be made. For patients living with these conditions, plasma donors are everyday heroes.
Jessica, living with MMN, noted “[the plasma given by plasma donors] is a gift of life, literally giving me the ability to walk and use my hands. Without IG therapy, I would progress to wheelchair dependence.” Jessica recalled that her first infusion reversed her paralysis that she was experiencing because of MMN, and that regular infusions allow her to remain independent. Her plasma medicine has allowed “the continued usage of my arms and legs, and allows me to be semi-self-sufficient. Without plasma, I would more-than-likely need a full-time caregiver”.
Brenda, also living with MMN, also thanks her plasma medicine for giving her life. During a long diagnosis process, Brenda was given IG therapy to rule out ALS. When the IG therapy started working, Brenda remembers that she “felt the first sign of cautious hope that [she] was not going to be issued a death sentence.” That hope has continued for Brenda. She says “I started to feel like myself again, getting my confidence back, not needing a brace for my dropped foot, not afraid to go out by myself, feeling about 75% of the old me on good days, just stronger than I had felt in several years. I was back to doing everything I loved. Without plasma donations to make my only treatment option I would probably be using a walker by now, lose the use of my hands and arms and eventually end up in a wheelchair.
Merrilyn, who experienced GBS in the past, recalls that IG therapy stopped the progression of the paralysis that characterizes the disease and saved her life. Merrilyn advocates for policies to help others have access to IG, noting “it helps my CIDP and MMN brothers and sisters have a somewhat normal life”.
The supply of source plasma is getting low for many reasons, which could potentially impact the creation of medicines such as IG. For patients like Jessica, Brenda, Merrilyn, and thousands of others around the world, this could mean skipping treatments and feeling the disease start to take over again. There are many other medicines made from source plasma that treat other rare and debilitating conditions, such as bleeding disorders, primary immunodeficiency, Alpha-1 Antitrypsin Deficiency, and emergency medicine uses. If you are interested in becoming an everyday hero for the thousands of patients who rely on source plasma for their medicine, please visit https://www.donatingplasma.org/.
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