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[PIDD-1] PIDD Iceberg

MyHealthTeam

Created on May 29, 2025

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Transcript

What people see

Fatigue

Frequent infections

Anxiety or depression

Side effects from treatments

What people don’t see

Feeling alone

Fear of hospitals

Mental overload from complex care

Fatigue

Fatigue is constant tiredness that can limit daily activities and can’t be resolved by rest alone. A member of myRAteam with PI shared, “So tired of fighting constant colds and sinus infections.”

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Mental overload from complex care

Life with PI can mean juggling specialists, medications, and side effects. A member of myRAteam said, “I have primary immunodeficiency disease. I just started treatment for RA two weeks ago and am finding it hard.”

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Fear of hospitals

Many with PI have had long hospital stays, intense treatments, or traumatic care episodes. “I was hospitalized three years ago with pneumonia and in ICU for almost five days,” one myT1Dteam member with PI shared.

Anxiety or depression

Living with PI can bring anxiety, sadness, and burnout from symptoms, uncertainty, and isolation. One member of myRAteam shared, “Mentally I’m just not doing well with it. I’m just getting tired of the fight.”

Side effects from treatments

Intravenous immunoglobulin (IVIG), antibiotics, and immunosuppressants can have side effects. A myRAteam member said, “Been on IVIG for four years. I just started treatment for RA and am finding it hard to balance the side effects from both.”

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Frequent infections

PI often causes colds, pneumonia, or sinus infections that don’t respond well to treatment. A member of MyLupusTeam said, “Fighting three infections, but I’ve been resting, eating well, and drinking lots of water.”

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Feeling alone

Many people with PI feel emotionally isolated because few truly understand what it means to manage a chronic illness every day.

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