UKPIPS (registered charity no: 1148789) has been set up to provide information, advice and support to people living with a Primary Antibody Deficiency (PAD) or any other Primary Immune Deficiency (PID).It has the followi...
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There is currently little support or information for people living with a primary antibody deficiency in the UK, with many people often suffering from extreme ill health for a number of years
people living with a primary antibody deficiency go undiagnosed for five years. This delay in receiving appropriate treatment leads to irreversible damage of the lungs and other organs. On a psychological level, it can have devastating effects on their relationships, work life and day to day living
We are so pleased that some of the major pharmaceutical companies are attending our meeting to discuss the work of UKPIPS in raising awareness of these diseases and in supporting those who live with a PAD
My son needs a specialist drug called polyglobin. While this has been approved for other patients in England, the Belfast Trust in NI are refusing to pay for it as they say it is unlicenced
Without the polyglobin Curtis will not grow or develop properly as he is unable to retain adequate nutrition due to constant sickness and diarrhoea. His physical and mental development will be permanently stunted and he may die if this disease is not stopped
There is also a lot of misunderstanding of the condition, including even the basic principles of caring for a patient with a compromised immune system
By using World Primary Immune Deficiency Week as a way to showcase our organisation to immunology centres, we are anxious to further help promote awareness of our organisation to both patients and the medical profession