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Living with Primary Immunodeficiency
Thanks to new therapies, greater public awareness, and better access to information, many patients with Primary Immunodeficiencies (PI) are leading more normal lives - going to school, camp, work, playing sports, and enjoying a real quality of life.

If you or someone you care for has been diagnosed with PI, here are some next steps that you might want to consider:
  1. Read through the About PI section to learn more about diagnosis and treatment of PI.
  2. Choosing and Working with a Physician. You might have already identified a physician. If not, you may Find an Expert in your area through our Referral Network of Physicians and Centers.
  3. Health Maintenance
    Please note, the information contained on these pages is not intended to provide specific medical advice, rather it is intended for informational purposes only, in order to provide a better understanding of these diseases. Please consult with a qualified physician for answers to your questions.

    Doctors believe people with a Primary Immunodeficiency can lead active and full lives. A guiding objective of the Jeffrey Modell Foundation is to help people with PI regain or maintain control of their lives by:
    1. Participating in work, school, family, and social activities;
    2. Decreasing the number and severity of infections;
    3. Having few, if any, side effects from medications and other treatments;
    4. Feeling good about themselves and their treatment program.
    If your child has PI, maintaining a normal lifestyle is essential to coping with the disease. As a parent, nobody knows your child better than you. You know when your child is ready to "meet the world" and you also know when he/she needs a little extra rest. Try to establish a balance so that your child can understand his/her limitations while enjoying activities with other children.
  4. Emotional and Financial Needs
    There has never been more hope for people with PI. All the same, patients and families dealing with any Primary Immunodeficiency disease face a number of difficulties. Families struggling with PI face misunderstandings and discrimination from schoolmates, teachers, neighbors, employers, and insurers who often just don't understand. Many think it's "all in the mind"... or confuse the condition with AIDS.

    A patient with PI can have long periods of normal health, and then suddenly be struck by high fevers, pneumonia, or other similar problems. The illnesses themselves can be frightening, the lack of a definite diagnosis or treatment is frustrating, and anticipation of the next attack can turn even healthy periods into times of great anxiety.

    Working to develop a cooperative relationship with employers, school officials or teachers, and educating them about your or your child's circumstances will help them better understand the nature of a PI disease. You may want to suggest that they visit this website. Our sample letters section features downloadable letters you may give to employers and school officials to help build a stronger relationship. In addition, the Immune Deficiency Foundation offers a guide for schools to help them deal with the specific needs of students with disabilities.

    Anger, fear, and uncertainty are common feelings for patients and families coping with PI. All of these feelings are valid and need to be accepted and worked through for the emotional health of everyone involved.

    Connecting with Others
    An important way to deal with the emotional toll of having PI is to discuss these issues with trained professionals or others in the PI community. Find people you can talk to. We welcome you to visit our Message Board.

    Patient support groups can be very helpful and can be found around the world. Please visit the Related Links section of our site for a listing of groups. In addition, the Immune Deficiency Foundation (IDF) has a network of support groups. If you live outside of the United States, you may be able to find a patient group in your country through the International Patient Organization for Primary Immunodeficiencies (IPOPI) website.

    If you cannot find a support group specifically for Primary Immunodeficiency near you, look for a group with similar concerns, such as coping with a chronically ill family member or child. You may even want to discuss organizing your own support group with your immunologist or other health care provider, who might be able to contact the other patients and families. The World Immunodeficiency Network (WIN), an initiative of the Jeffrey Modell Foundation, unites and strengthens the voices of patient organizations worldwide. WIN offers direct funding to provide meaningful support and encouragement to patient groups. Learn more about the WIN program.

    The Jeffrey Modell Foundation Kids Day program was created to provide Primary Immunodeficiency patients with a day of sharing, caring, hope and fun. These events offer a welcome opportunity for patients and their families to form friendships with one another, as well as to get to know their physicians and nurses in a casual environment. To learn more about the Kids Day program, contact JMF at info@jmfworld.org.

    Financial Assistance
    In addition to missed work days, the costs of doctor's visits, treatment and hospitalizations all have a significant financial impact on families. You may be able to get assistance with the cost of health insurance premiums, prescriptions, and co-payments by contacting Patient Services Incorporated.
What next?
We hope that you now have a better idea of what PI is, how to recognize it, and what can be done about it. If you suspect this condition in yourself or someone else, discuss what you have just read with your physician. Your doctor is your partner in detecting, treating and managing your immunodeficiency.

We invite you to complete our brief online Patient Survey, to help us continue to gather data in order to help formulate plans to address Primary Immunodeficiencies.

If you still have questions, please e-mail us at info@jmfworld.org or call us on our toll-free hotline at 1-866-INFO-4-PI.

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