Feature Story: A Mother's Health
Having children while living with a rare disease
King of Prussia, PA — 07 May 2014
Learning you have a rare, chronic medical condition can be unsettling, frustrating and downright scary. For primary immunodeficiency (PI) patient Rebecca Johnson, 33, it also made her question whether she could realize her dream of becoming a mother.
It wasn’t until hearing the story of another woman with PI who had a baby that Rebecca’s fears subsided. Now with a baby of her own, Rebecca wants to share her story with other women with PI who may want to start a family.
Throughout her childhood and beyond, Rebecca had repeated illnesses, ranging from pneumonia on her first birthday to staph infections. She also experienced frequent bouts of colds, flu and other maladies.
At age 26, Rebecca was diagnosed with common variable immune deficiency (CVID), one of the most common of the more than 200 types of PI disorders recognized by the World Health Organization. According to the Immune Deficiency Foundation, CVID affects approximately 1 in 25,000 people. CVID is an antibody deficiency that leaves the immune system unable to defend against bacteria and viruses, resulting in recurrent and often severe infections. The condition affects both males and females.
Shortly after diagnosis, Rebecca began treatments with subcutaneous immunoglobulin to boost her immune system. While her overall health improved, Rebecca became concerned about how CVID and its treatment might affect her dream of becoming a mother.
“My immunologist addressed my concerns and connected me with a woman with PI who had recently had a baby,” Rebecca said. “Hearing her story made me feel more comfortable with raising a family despite the challenges of living with PI.”
In March 2012, Rebecca gave birth to her son Grant.
A healthy, happy outlook
Today, Rebecca works full time as an interior design project manager, and enjoys participating in a range of rigorous physical activities, including hiking, biking, traveling with her husband (a personal trainer), and spending quality time with her son.
She continues to treat her condition with
Hizentra®, (Immune Globulin Subcutaneous [Human]).
CSL Behring, is an immunoglobulin replacement therapy indicated for the treatment of primary humoral immunodeficiency. The therapy is administered subcutaneously (under the skin) weekly or biweekly (once every two weeks) to help protect those with PI against infections.
“I learned that living with a rare disease doesn’t mean giving up on your dreams,” Rebecca said. “I encourage people with PI to share their goals and concerns with their doctors.”
Important Safety Information
Immune Globulin Subcutaneous (Human), Hizentra®, treats various forms of primary immunodeficiency (PI) in patients age 2 and over.
WARNING: Thrombosis (blood clotting) can occur with immune globulin products, including Hizentra. Risk factors can include: advanced age, prolonged immobilization, a history of blood clotting or hyperviscosity (blood thickness), use of estrogens, installed vascular catheters, and cardiovascular risk factors.
If you are at high risk of thrombosis, your doctor will prescribe Hizentra at the minimum dose and infusion rate practicable and will monitor you for signs of thrombosis and hyperviscosity. Always drink sufficient fluids before administration.
Tell your doctor if you have had a serious reaction to other immune globulin medicines or have been told you also have a deficiency of the immunoglobulin called IgA, as you might not be able to take Hizentra. You should not take Hizentra if you know you have hyperprolinemia (too much proline in your blood).
Infuse Hizentra under your skin only; do not inject into a blood vessel.
Allergic reactions can occur with Hizentra. If your doctor suspects you are having a bad allergic reaction or are going into shock, treatment will be discontinued. Immediately tell your doctor or go to the emergency room if you have signs of such a reaction, including hives, trouble breathing, wheezing, dizziness, or fainting.
Tell your doctor about any side effects that concern you. Immediately report symptoms that could indicate a blood clot, including pain and/or swelling of an arm or leg, with warmth over affected area; discoloration in arm or leg; unexplained shortness of breath; chest pain or discomfort that worsens with deep breathing; unexplained rapid pulse; and numbness or weakness on one side of the body. Your doctor will also monitor symptoms that could indicate hemolysis (destruction of red blood cells), and other potentially serious reactions that have been seen with Ig treatment, including aseptic meningitis syndrome (brain swelling); kidney problems; and transfusion-related acute lung injury.
The most common drug-related adverse reactions in the clinical trial for Hizentra were swelling, pain, redness, heat or itching at the site of injection; headache; back pain; diarrhea; tiredness; cough; rash; itching; nausea and vomiting.
Hizentra is made from components of human blood. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.
Before being treated with Hizentra, inform your doctor if you are pregnant, nursing or plan to become pregnant. Vaccines (such as measles, mumps and rubella) might not work well if you are using Hizentra. Before receiving any vaccine, tell the healthcare professional you are being treated with Hizentra.
For full prescribing information, visit
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Senior Manager, Public Relations and Communications