Let's Talk Lingo

Hi, my name is Colin Seal and I have a Primary Immunodeficiency called Common Variable Immune Deficiency or CVID. I am currently on sub-q infusions for IgG replacement therapy that helps keep me alive and healthy. It comes from the generosity of plasma donors, and I am likely to be on it for the rest of my life.

Let’s Break It Down

Yeah, so what the heck does all of that mean. Let’s talk about why it is important to understand and explain the acronyms and phrases when we talk to people around us. 

Primary Immunodeficiency Disease (PI): According to the American Academy of Allergy, Asthma, and Immunology (AAAAI) there are more than 300 identified kinds of primary immunodeficiency and this is typically when the cause of immune deficiency is hereditary or genetic.

Common Variable Immune Deficiency(CVID): One of the most common forms of primary immunodeficiency according to AAAAI. CVID leaves the immune system unable to defend against bacteria and viruses. Often causes recurrent and severe infections, including infections in the ears, sinuses and respiratory tract.

Subcutaneous Infusions (SCIg or Sub-q): An administration method used for Igg replacement therapy. First approved for the U.S. in 2006, it involves infusing the medicine underneath the subcutaneous tissue of the skin. Other forms of infusions include intravenous infusions or IVIg.

IgG Replacement Therapy: IgG is a protein obtained from plasma through manufacturing techniques that process it and safely eliminate potential infectious agents. According to AAAAI website IgG is a part of the blood that contains antibodies.

Plasma Donation: Or source plasma collection, is regulated by the FDA. Plasma is collected through a process called plasmapheresis, which involves collecting blood from the donor and separating the plasma from the red blood cells, and then returning the red blood cells to the donor. Because the red blood cells are returned, donors are allowed to donated twice in a seven-day period, with 48 hours between donations. For IgG replacement therapy, it can take up to 130 donations on average to treat one PI patient for one year.

I hope this helps explains a little more about how I talk about my PI and the differences between different terms. As many people are not aware of PI or IgG replacement therapies, it is important that we are able to educate them by talking about our disease and therapy appropriately.

If you are not sure how to talk to others about your PI or infusions, let us know and maybe we can help! ContactIC@immunecompetence.org.

References:

AAAAI - Primary Immunodeficiency Accessed at: http://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease

AAAAI – CVID Overview Accessed at: http://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease/common-variable-immunodeficiency

L. Kobrynski Aug, 24, 2012 Subcutanous immunoglobulin therapy: a new option for patients with primary immunodeficiency diseases. Accessed at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3430092/

AAAAI – Immunoglobulin (IGG) Replacement Therapy Accessed at https://www.aaaai.org/conditions-and-treatments/conditions-dictionary/immunoglobulin-(IgG)-replacement-therapy

PPTA – Donating Source Plasma Accessed at: https://www.donatingplasma.org/donation/plasma