Primary immunodeficiency disorders (PIDD) affect the immune system. PIDD can damage either of your immune system’s two main functions, hurting your ability to:
- Fight infection (immune deficiency) — resulting in frequent, severe, and/or atypical infections
- Control inflammation (immune dysregulation) — resulting in enlarged lymph nodes, liver or spleen and may lead to autoimmune or severe allergic disease
The Road to PIDD Treatment at UVA
As you go through this process, we’re with you at every step. We’ll thoroughly investigate your condition and plot a course of treatment unique to you.
Before your first visit: We review your referral (from your doctor) and medical records.
At your first visit: We’ll gather more details about your medical history. Then, we’ll know what tests we need to evaluate your condition. We may need to schedule you for lab and/or genetic testing, imaging and lung function testing. We’ll also plan to consult with relevant specialists if needed.
During your first follow-up visit: Having completed our evaluation, we’ll review it with you and, together, develop a plan for your care.
Treatment: You’ll most likely need medication specific to your unique situation. Since the process to obtain these medications can be complex and difficult to manage, we have a dedicated team to help you get what you need.
Regular follow-up visits: We’ll need to see you regularly to monitor your health and evaluate the success of the medication. We’ll make treatment adjustments as needed and watch for any changes or complications of your disease.
Who Gets PIDD?
PIDD is rare. However, we can’t predict who will or won’t develop the disease. It can develop at any age and in any person, regardless of medical history.
You do have a higher risk of PIDD if you’ve inherited certain genes or have a family history. But not all PIDD have a known genetic cause. While we know of 350 genetic defects to date that cause this disorder, we don’t know what causes many more forms of PIDD. Even knowing who to test can be challenging, since so many cases go undiagnosed. These diseases can look like many other diseases, making it hard to see the root disorder.
What Does PIDD Look Like?
Warning signs of PIDD include:
- Frequent ear, sinus or respiratory infections
- Long-lasting, hard-to-treat infections
- Recurring fungal infections
- Infections caused by organisms that normally don’t cause disease
- Invasive infections involving internal organs, bones, bloodstream and central nervous system
- Multiple, frequent autoimmune disorders
Finding Answers to Immune Disease
There’s still much research to do. Honored with the designation as a Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies, our Primary Immunodeficiency Clinic conducts research in the pursuit of answers for PIDD patients.
Read about our center designation and the Jeffrey Modell Foundation story.
Unique Aspects of Our Care
Our center has unique features that contribute to the quality of your care and to your patient experience. We offer:
- Two clinics — one dedicated to children, the other to adults
- The ability to seamlessly transition patients from the pediatric to the adult clinic, giving patients continuity of care over their lifetime
- An established network of specialists with expertise in specific PIDD complications help us develop the best strategies for treatment
The PIDD care team at our clinic includes doctors, nurses, nurse coordinator, lab technicians and genetic counselors.