A chronic or rare illness can harm more than a person’s health, it can also affect the strongest of relationships. Because the ill partner isn’t feeling well, he or she may be prone to significant mood swings. If the caregiver is not able to adjust to these shifts in demeanor, the relationship can be strained and both parties can find themselves in a state of depression.
At the same time, keeping a strong relationship is critical for those facing a serious medical condition. According to an article published in the Journal PLoS Medicine, people with rich and fulfilling relationships have a 50 percent greater likelihood of achieving a positive outcome with their health than those who lack meaningful companionship.
Here are three tips to help families facing a rare and serious medical condition handle stress:
Tip 1: Keep Lines of Communication Open
A lack of communication in a relationship can lead to distance and a lack of intimacy, which could ultimately harm the sick partner’s ability to get well. According to the American Psychological Association, discussing challenging issues related to a partner’s illness allows families to work through difficulties more effectively than if the issues are ignored.
Lynne Doebber is one person who has benefited from open lines of communication with family members. Lynne has common variable immunodeficiency (CVID), a type of primary immunodeficiency (PI) in which her immune system functions inadequately, leaving her with greater susceptibility to infection.
"I am fortunate to have a strong support system in my family," Lynne said. "By keeping an open dialogue with them, I am able to navigate through difficult times associated with PI, a rare and serious medical condition."
Tip 2: Schedule Your Treatment around Your Life
Treatment regimens and doctors appointments can disrupt a family’s routine and take time from shared activities and interests. It is important for patients to speak with their doctors about available treatment options and the best therapy to fit their needs.
Because Lynne likes to remain active, in 2010 she transitioned to an innovative subcutaneous (i.e., under the skin) immunoglobulin called Hizentra® (Immune Globulin Subcutaneous [Human], 20% Liquid). Hizentra, developed by CSL Behring, is the first and only 20 percent subcutaneous immunoglobulin indicated for the treatment of primary humoral immunodeficiency. Hizentra can be self-administered at home and can be stored at room temperature throughout its entire 30-month shelf life. This allows Lynne to bring her therapy wherever she goes.
"The convenience Hizentra provides allows me to maintain my active life -- hiking with my husband, gardening and taking classes," Lynne said.
Tip 3: Look Out For the Caregiver’s Well-Being – It’s a Two Way Street
While the ill partner is generally the center of attention, caregivers need to focus on their own physical and emotional health as well. The website Caring.com reports 1 in 4 caregivers say they experience depression, significantly higher than the national average documented in a study last year by the U.S. Centers for Disease Control and Prevention. Because of this, it is essential for the well-being of the caregiver that his or her needs are also being met.
Chronic illness can challenge the strongest of relationships, so it is essential that families support each other and work together to manage the disorder.
Important Safety Information
Immune Globulin Subcutaneous (Human), Hizentra®, is indicated for the treatment of various forms of primary immunodeficiency (PI).
If you have a history of anaphylactic or severe systemic response to immune globulin preparations or selective immunoglobulin A deficiency, check with your physician, as Hizentra should not be used.
Hizentra is to be infused under your skin only; do not inject into a blood vessel.
Hypersensitivity reactions may occur with Hizentra. If your physician suspects you are having a negative reaction or are going into shock, treatment will be discontinued. Because Hizentra contains proline, you cannot be treated with Hizentra if you have hyperprolinemia (a high level of proline in your blood).
Hizentra is derived from human plasma. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.
The most common drug-related adverse reactions (seen in 5% or more of subjects in the clinical trial) were local reactions (swelling, redness, heat, pain, and itching at the injection site), headache, vomiting, pain, and fatigue.
Your physician will monitor for potentially serious reactions associated with intravenous immunoglobulin treatment that might also occur with Hizentra, including renal dysfunction/failure, osmotic nephropathy, thrombotic events, aseptic meningitis syndrome (AMS), hemolysis, and transfusion-related acute lung injury (TRALI).
Ig administration may impair the effect of virus vaccines, such as measles, mumps and rubella. Before getting any vaccination, inform your doctor that you are using Hizentra.
For full prescribing information, visit www.hizentra.com/consumer/prescribing-information.aspx.
You are encouraged to report negative effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.i Holt-Lunstad J, Smith TB, Layton JB, 2010 Social Relationships and Mortality Risk: A Meta-analytic Review. PLoS Med 7(7): e1000316. doi:10.1371/journal.pmed.1000316
ii Kiecolt-Glaser, J. Marriage and Health: His and Hers. Psychological Bulletin: American Psychological Association. May 14, 2004;1B.
iii Depression Levels Among Caregivers More Than Two Times National Average, Caring.com's Newest Study Reveals [news release]. San Mateo, CA: Caring.com; April, 2011. http://www.caring.com/about/news-room/depression-levels-among-caregivers-more-than-two-times-national-average-caring-coms-newest-study-reveals.html. Accessed April 28, 2011.
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