New charity and pharmaceuticals come together to raise awareness of immune deficiency diseases


A new charity - UKPIPS (United Kingdom Primary Immune-deficiency Patient Support) - and some of the leading UK pharmaceutical companies are set to discuss the support, treatment and diagnosis of people living with a Primary Antibody Deficiency (PAD), and other Primary Immune Deficiencies (PID)

A Primary Antibody Deficiency is where the immune system cannot make antibodies and means that something like the common cold or a ‘flu bug, which a person with a normal functioning immune system will eventually shake off, can seriously cause damage to a person with a PAD – even to the point where it is life threatening.

The problem causing the inability of the immune system to make antibodies is not the same in every person who has an antibody deficiency, which often delays diagnosis.

Liz Macartney, Co-ordinator and a Trustee of UKPIPS , comments: “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.

“T ypically, 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.

“Once diagnosed, while a PAD is not curable, it can be managed to a certain extent by medications and, in some cases, bi-monthly immunoglobulin transfusions (which give people a dose of antibodies from healthy people).

“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.”

The meeting will take place on November 26th at the Hilton Birmingham Metropole. Companies or press wishing to attend this event should contact Liz Macartney (details below).

For more information on UKPIPS , please visit: www.ukpips.org.uk

Ends

Contact:

Liz Macartney, UKPIPS Co-ordinator & Trustee, UKPIPS

Telephone: 07531 076409, Email : ukpips3@gmail.com

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 following key objectives:

To provide information, advice and support.

To promote early diagnosis. Currently, this can be at least five years – and often more.

To promote social welfare.

To offer advocacy.

To increase awareness of these conditions.

To promote the provision of appropriate medical treatment.

To encourage research into psychological, emotional and practical needs.

To support the rights of people living with a PAD or PID so they may participate fully in employment, education and decisions about their medical treatment.

To ease the social isolation of people living with these conditions – and those who care for them.

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About Us

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 following key objectives:• To provide information, advice and support• To promote early diagnosis. Currently, this can be at least five years – and often more.• To promote social welfare• To offer advocacy• To increase awareness of these conditions• To promote the provision of appropriate medical treatment.• To encourage research into psychological, emotional and practical needs• To support the rights of people living with a PAD or PID so they may participate fully in employment, education and decisions about their medical treatment• To ease the social isolation of people living with these conditions – and those who care for them.

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Quick facts

A Primary Antibody Deficiency is where the immune system cannot make antibodies and means that something like the common cold or a ‘flu bug, which a person with a normal functioning immune system will eventually shake off, can seriously cause damage to a person with a PAD – even to the point where it is life threatening
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Quotes

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
Liz Macartney, UKPIPS
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
Liz Macartney, UKPIPS
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
Liz Macartney, UKPIPS