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Letter to Rt Hon Chris Grayling MP

Thank you for replying to Mr Luff with regard to the difficulty some people who live with a Primary Immune Deficiency experience when being assessed by medical practitioners who have no knowledge of these Rare Diseases.

Thank you for replying to Mr Luff with regard to the difficulty some people who live with a Primary Immune Deficiency experience when being assessed by medical practitioners who have no knowledge of these Rare Diseases.

The effects of these diseases vary immensely from person to person and our members ask us for help both in situations in which they would like to work, but feel that they are being discriminated against, and in situations where they are too unwell to work and have to face assessment.

Curtis Croskery Article in the Daily Mirror

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UKPIPS Introduction – Conceived, For & Run

UK Primary Immune Deficiency Patient Support (UKPIPS) is the new UK mouthpiece for people living with a Primary Antibody or Immune Deficiency. Conceived by people living with Primary Antibody and Primary Immune Deficiency. For people living with Primary Antibody and Primary Immune Deficiency, and Run by people living with Primary Antibody and Primary Immune Deficiency.

SCID Screening Letter

Severe Combined Immunodeficiency, which is usually known as SCID, is a Primary Immune Deficiency which affects both the T Cells and the B cells of the immune system. The immune system is incredibly complex, but to explain this in a very simplistic way, B cells fight bacterial infections and T cells fight viruses and fungus.
Now, the most common type of Primary Immune Deficiency (PID) is called common variable immune deficiency (CVID) and this affects the B cells of people, making it very hard or impossible for them to fight bacteria. Without treatment people living with CVID will get very ill and may eventually die.