SPECIAL REPORT: Albion Teen's Fight Against Fate
Three plasmapheresis treatments, taking the risk of a new treatment as part of a research study, and 170 days in the hospital in just one year. That's what 18-year-old Kylie Allen-Kulyk from Albion had to endure in 2018. Her battle is continuing this year with already almost a month's time spent in the hospital.
Kylie is battling Stiff Person Syndrome, which is a condition that affects one in a million people. It causes excruciating muscle spasms that can be strong enough to tear ligaments and break bones. Erie News Now first brought you her story in December and has continued to follow her treatments over the past few months.
One of the treatments that has given Kylie a few weeks of freedom from her condition is plasmapheresis, or plasma exchange, combined with IVIG. During plasmapheresis, her blood is filtered through a machine and separated from her plasma.
Plasma is the mostly water part of blood that contains proteins, antibodies, and enzymes. Antibodies are the main reason Kylie needs these treatments. Her body essentially trains her antibodies to attack her motor neurons and block them from controlling her muscles. That's when her body starts to spasm and twist in ways it isn't meant to.
After most of her plasma is filtered out of her body, the red blood cells are then returned to her. Kylie's plasma is thrown away and then replaced with plasma from other people.
The plasma she receives isn't directly taken from another person and put into her. Instead, her treatments are made over a year's time by using donations from multiple people.
The treatments start at the plasma donation center, where people come in to donate their plasma. It's a similar process to donating blood, but it has a few extra steps and takes longer. When first going to donate, people need to have a government-issued ID, proof of address and your Social Security Card.
New donors are given a health questionnaire, a physical and have a sample of their blood tested for infectious diseases like HIV. Fingerprints are also taken during the first visit to ensure the center is taking plasma from the same person when they come back to donate again.
After the first donation, returning donors will use their fingerprints to sign in at the check-in kiosks. The kiosks give an abbreviated health questionnaire each time the donor comes in and alerts staff that the donor is there. After checking in, the donor is taken to the back for a brief health screening before being sent to the donation floor.
Once on the floor, the machine is set up with fresh tubing and a container that links directly back to the donor. Staff then inserts the needle and plasmapheresis begins. Instead of getting new plasma like Kylie, donors are given saline to replace the fluids lost. Because of this, donors can regenerate plasma quickly and donate twice in a seven day period.
After the container is filled with the donor's plasma and the saline is received, the donor is then dismissed and free to go on with their day. Donation typically takes anywhere from 1.5-2 hours, but the first can take longer. Donors are typically compensated for their time, but the amount of compensation depends on the donation center.
How Your Plasma Becomes Medicine
The container, or unit, of plasma taken from a donor is immediately logged and taken to the on-site lab for sampling. At GRIFOLS, the only plasma donation center currently in Erie, four samples are pulled from each container. Those samples are sent to the GRIFOLS lab in Texas to be tested for diseases such as Hepatitis and HIV.
After samples are taken, the unit is stored in an on-site freezer until test results are back and the unit is cleared. Then, it is shipped off to a warehouse where it sits for a minimum of 60 days. After the 60 days the unit is sent to manufacturing where it goes through fractionation. Fractionation separates the proteins out and then it goes through purification to further safeguard the plasma product.
The entire process from arm to medicine takes about one year. At each step of the process, including when it is given to a patient, the plasma can be traced back to the original donor.
Besides Kylie, there are thousands of people in the Erie area who depend on plasma products for treatment. Plasma products are used to treat hemophilia, CIPD, Alpha 1, and primary immune deficiency. Generally, plasma products are given to people who are missing certain proteins, have autoimmune diseases or have blood problems.