Remember the Girls provides education on X-linked conditions, family planning resources, personal stories, access to research studies, and an online group where women can share their experiences.
Psychologist Dr. Sacha McBain provides insight into how PI causes medical trauma and offers solutions for improving mental health.
SCID Compass provides a short animated video about family planning to help families explore their options after having a child a with SCID.
The Immune Deficiency Foundation Clinician Finder provides a searchable database of specialists who have experience caring for patients with primary immunodeficiency.
Lynn Olla spent decades dealing with pneumonia, bronchitis, and sinusitis until an immunologist diagnosed her with common variable immune deficiency diagnosis (CVID) at age 55.
Update: Families of babies born with Artemis-deficient severe combined immunodeficiency (SCID) who don’t respond well to standard bone marrow transplant (BMT) treatment may consider pursuing a more effective treatment for their infants – gene therapy.
Kathi and Rick Narlock have advocated for their son Nick Narlock since infancy when he was diagnosed with chronic granulomatous disease (CGD) and supported him as he underwent a bone marrow transplant (BMT) treatment.
Susan Day’s diagnosis of common variable immune deficiency (CVID) at 41 helped explain the infections and fatigue she experienced since childhood and led to the testing of her children, who also have primary immunodeficiency (PI).
A primary immunodeficiency (PI) diagnosis causes added stressors, so it’s crucial to maintain your emotional well-being as you progress in your PI journey.
Those with primary immunodeficiency (PI) who suffer from gastrointestinal disorders should seek a provider who can determine why the PI is causing symptoms so that proper treatment can be administered.
