Ever since Lori Motal was a little girl, she remembers having constant sinus and respiratory infections. It seemed like a never-ending loop between infection and antibiotics, with little reprieve. It wasn't until at age 39, after advocating for her health and well-being for a few years, that an immunologist Motal was seeing for allergies decided to test her for primary immunodeficiency (PI.) Finally, Motal had the answers she was so desperately looking for—a diagnosis of specific antibody deficiency (SAD) and a path to treat it. Plasma.
In 2018, Motal began her journey living with a chronic rare condition that made her become an expert in her own healthcare. A nurse came to her home to teach her how to give herself infusions of subcutaneous immunoglobulin (SCIG), derived from plasma. Motal learned she would have to administer SCIG every week for the rest of her life. She says the idea petrified her because she was not a fan of needles, but with supportive but stern coaching from the nurse, after a few visits, she said she realized “it wasn't too bad.”
In the beginning, Motal experienced a number of oddities in receiving her medication. The dosages changed inside of the vials, and the number of vials delivered changed. Motal came to learn that this was due to shortages in supply based on the amount of plasma being donated and available to make the medication. Later on, after finding a rhythm with the medication she was on, Motal had an allergic reaction and went off of treatment. After one month without proper medication for her PI, Motal did not feel well at all. But, she had to wait until her doctors went through the process to get approval from her insurance company to switch drugs.
Now, Motal feels grateful for the ways her diagnosis has allowed her to grow and find strength in her life. She has built a routine with her family around the nights she has to do her infusions to minimize the challenges of this inconvenience each week. Her husband takes care of dinner on these nights, and her son and his friends often check in on her while she does her infusions to see if there is anything she needs. The treatment typically takes about an hour but leaves her feeling tired and occasionally a bit itchy, nauseous, and with a headache. These symptoms, she has learned, can often be thwarted through proper rest and nutrition.
While many people wake up each morning and have to think very little about their bodies and keeping them well, that is not so for Motal. Every day, on top of an already busy schedule working and raising a family, Motal has to be mindful of risks so she does not go back to an old familiar place of feeling sick. She is careful about the germs she is exposed to, working as a teacher around kids all day. Often during lunch breaks, she has to make phone calls to insurance or doctors' offices. She has appointments to fit in and plasma medications to remember to infuse. She uses her social media and school community platforms now to advocate for plasma donation, knowing that her medication has been life-changing for her. That is why Motal is so grateful for everyone who donates plasma, most of whom she will never meet but many of whom have made it possible for her to live a normal life again, enjoying simple things like gardening, reading, fishing, and playing with her dog.
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