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Living with CVID: a rare disease, an invisible condition.
February 29 is making a return after a four year hiatus, marking 2016 as a Leap Year. February 29 is also Rare Disease Day. I had all but forgotten 2016 was Leap Year and knew little about Rare Disease Day (www.rarediseaseday.org/) until I sat down with Vicki Kipreos, NCBDDD’s Management Officer, where she shared her experiences living with Common Variable Immune Deficiency (CVID) - a rare form of primary immunodeficiency.
The National Center on Birth Defects and Developmental Disabilities (www.cdc.gov/ncbddd) works to explore conditions impacting some of the nation’s most vulnerable populations, including work with less common conditions and diseases. But due to limited funding and research in the area, there is little known about CVID.
Common Variable Immune Deficiency (CIVD) is a genetic mutation of B cells causing the body to stop making antibodies and subsequently the body is unable to fight infection. For many years Vicki fought pneumonia, asthma, and other breathing problems. She suffered through bronchitis, ear infections, strep throat, and other debilitating illnesses. During these times her physicians never looked for the root cause of her illnesses, they would only treated the symptoms. It was in 2009, when Vicki had a severe bout of pneumonia that hospitalized her for several weeks that the outlook of her condition changed. Treatment included heavy ineffective steroids, but still nothing to address the root cause. During one of three more hospitalizations that summer, a physician recommended she have a full allergy test performed by an allergist. The allergist, who also happened to be an immunologist, learned very quickly from her tests that she had CVID and he explained to her that her body has stopped making antibodies to fight infection.
Relieved to have finally found the root cause of her ongoing illnesses, Vicki’s physicians quickly identified appropriate treatment. While there is no cure for CVID, treatment includes a regimen of immunoglobulin infusions which Vicki is able to perform regularly in the comfort of her home. While demanding, Vicki is happy to have the treatment that now enables her to live a normal life. But Vicki has never let her condition keep her from the activities she enjoys and loves. A mother of two adult sons, she continues to live a full energized life. She’s active in her church, works full time, enjoys crocheting for family and friends, and loves to attend concerts with her husband! In addition, she serves as a liaison with the Immune Deficiency Foundation (IDF) (primaryimmune.org/), a non-profit dedicated to improving the improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency. She uses her voice to raise awareness around the signs and symptoms of CVID, and she often speaks with physicians about the condition, leaving behind educational materials/pamphlets for their offices that serve to educate patients and the medical professionals within the practice.
Vicki enjoys sharing her story and educating the public and hopes to continue doing her part to raise awareness. She is currently busy planning Atlanta’s inaugural 2016 IDF Walk for Primary Immunodeficiency (PI) with the goal of furthering the understanding of PI and raising funds for research and education.
Just as Leap Year is an occasion rare enough to make us take notice when it returns, many diseases considered rare, impact the lives of those around us. Their strength in dealing with those sometimes invisible battles is an example to all.
To learn more about rare diseases, visit: www.rarediseaseday.org/
Living with CVID: a rare disease, an invisible condition.
February 29 is making a return after a four year hiatus, marking 2016 as a Leap Year. February 29 is also Rare Disease Day. I had all but forgotten 2016 was Leap Year and knew little about Rare Disease Day (www.rarediseaseday.org/) until I sat down with Vicki Kipreos, NCBDDD’s Management Officer, where she shared her experiences living with Common Variable Immune Deficiency (CVID) - a rare form of primary immunodeficiency.
The National Center on Birth Defects and Developmental Disabilities (www.cdc.gov/ncbddd) works to explore conditions impacting some of the nation’s most vulnerable populations, including work with less common conditions and diseases. But due to limited funding and research in the area, there is little known about CVID.
Common Variable Immune Deficiency (CIVD) is a genetic mutation of B cells causing the body to stop making antibodies and subsequently the body is unable to fight infection. For many years Vicki fought pneumonia, asthma, and other breathing problems. She suffered through bronchitis, ear infections, strep throat, and other debilitating illnesses. During these times her physicians never looked for the root cause of her illnesses, they would only treated the symptoms. It was in 2009, when Vicki had a severe bout of pneumonia that hospitalized her for several weeks that the outlook of her condition changed. Treatment included heavy ineffective steroids, but still nothing to address the root cause. During one of three more hospitalizations that summer, a physician recommended she have a full allergy test performed by an allergist. The allergist, who also happened to be an immunologist, learned very quickly from her tests that she had CVID and he explained to her that her body has stopped making antibodies to fight infection.
Relieved to have finally found the root cause of her ongoing illnesses, Vicki’s physicians quickly identified appropriate treatment. While there is no cure for CVID, treatment includes a regimen of immunoglobulin infusions which Vicki is able to perform regularly in the comfort of her home. While demanding, Vicki is happy to have the treatment that now enables her to live a normal life. But Vicki has never let her condition keep her from the activities she enjoys and loves. A mother of two adult sons, she continues to live a full energized life. She’s active in her church, works full time, enjoys crocheting for family and friends, and loves to attend concerts with her husband! In addition, she serves as a liaison with the Immune Deficiency Foundation (IDF) (primaryimmune.org/), a non-profit dedicated to improving the improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency. She uses her voice to raise awareness around the signs and symptoms of CVID, and she often speaks with physicians about the condition, leaving behind educational materials/pamphlets for their offices that serve to educate patients and the medical professionals within the practice.
Vicki enjoys sharing her story and educating the public and hopes to continue doing her part to raise awareness. She is currently busy planning Atlanta’s inaugural 2016 IDF Walk for Primary Immunodeficiency (PI) with the goal of furthering the understanding of PI and raising funds for research and education.
Just as Leap Year is an occasion rare enough to make us take notice when it returns, many diseases considered rare, impact the lives of those around us. Their strength in dealing with those sometimes invisible battles is an example to all.
To learn more about rare diseases, visit: www.rarediseaseday.org/