Living With Primary Immunodeficiencies
A helpful guide for patients and caregivers
By Sara J. LeBien
Section One WHAT HAPPENS AFTER THE DIAGNOSIS
Section Two WHAT TO EXPECT AS YOUR CHILD GROWS OLDER
Section Three ADULT ONSET
Section Four IMPORTANT ELEMENTS FOR SUCCESSFUL COPING
Section Five SUMMARY OF DO NOT’S WE SHOULD
BE AWARE OF
Section Six SUMMARY OF DO’S TO KEEP IN MIND
Section Seven WHAT IS IPOPI and HOW CAN IT HELP?
Section Eight HELPFUL PUBLICATIONS
This booklet is written by an American mother of an adult son with a primary immune deficiency disorder; common variable immune deficiency and chronic malabsorption. It represents her family’s experiences of living with chronic illness over a period of thirty seven years, and her interaction with other parents of children with primary immune deficiency as well as adult patients. She addresses the emotional side effects of this disorder, and includes experiences of other parents of pediatric primary immune deficiency patients and adult patients who kindly offered suggestions from their personal experiences. In addition, there are quotes from other publications that focus on living with chronic illness.
It is our hope that this booklet will help you be better prepared for what you may encounter, and that it offers practical suggestions for coping with typical daily challenges. In addition, it may help you maintain a more stable management of your loved one’s health, as well as maintain your family’s stability while living with chronic illness. It is encouraging to know that cures are being found for some of these disorders.
We do not have a cure for the disorder, but we have solutions for many of the problems. Some of us have had a difficult journey, and now we want to pass along information and suggestions to make your journey less stressful.
PRIMARY IMMUNE DEFICIENCY or PRIMARY IMMUNODEFICIENCY disorders often go undetected because many doctors are unfamiliar with them and only treat the symptoms rather than diagnose the basic disorders. These disorders manifest themselves in a variety of ways, and the seriousness of primary immune deficiency varies considerably . Many people with primary immune deficiency have recurring infections, but nothing serious enough to require hospitalization, while others do have more serious complications requiring hospitalization. Some have few restrictions in their daily living, while others have many restrictions.
To deal with these recurring illnesses the parents or spouses of an immune deficient person face many challenges – physically, intellectually, and emotionally. It can be physically tiring to take care of a sick child or spouse along with all the other family responsibilities, and it requires questioning and research to understand the disorder. Many articles and publications are available to us through our primary immune deficiency organizations and various web sites. But living with a primary immune deficiency also has emotional effects on both the children and adult persons with this disorder and the other family members.Most of us experience several emotions while coping with PID. If we are prepared for some of the possible negative aspects of chronic illness and how they affect our family we can begin to deal with those problems effectively before they become serious.