CVID

Michael's story continues below...

Michael was diagnosed with CVID back in October 1998 after having pneumonia three times within 18 months with increasing severity. To say that it has changed his life is a little of an understatement.
CVID stands for Common Variable Immunodeficiency and in basic terms it means that Michael has an immune system that’s up the chute! This means that he picks up infections, etc very easily as he has no natural defences and now has to have immunoglobulin pumped into him to artificially boost his immune system.
Immunoglobulin is a blood product and is derived from blood donors, so each person that gives blood potentially helps to treat Michael and others like him.

When Michael was first diagnosed with this condition little was known about how to treat it effectively. To start off with he received 3-weekly intravenous infusions of powdered immunoglobulin mixed with water at the Norfolk & Norwich Hospital but was soon referred to immunologist Dr Andrew Exley and his team within the area of Respiratory Infection, Inflammation & Immunology (RIII) at Papworth Hospital in Cambridgeshire (being the nearest hospital with an immunologist, over 70 miles away!) At this point it’s fair to say that Michael’s treatment changed direction for the better.
It was discovered that 3-weekly infusions were simply not effective enough – week 1 was fine, but by the second week the levels of immunity had dropped significantly and by the third week the immunoglobulin had all but gone meaning there was an increased risk of picking up infections.
The Papworth team along with one of their medical suppliers were keen to get their patients on to subcutaneous home therapy – a system tried and tested in Sweden with great success but a therapy that had not yet taken off in the UK. Also a suitable drug needed to be licensed as the existing drug used for intravenous infusions in the UK was not suitable for this type of treatment.
October 1999 saw Michael commence a drug trial and he started a 10 week training course travelling to Cambridgeshire once every week to be taught how to receive and give the new subcutaneous home therapy. Michael was Papworth’s first patient to do so. The treatment entails drawing a fluid immunoglobulin into syringes and the insertion of needles into his body connected to small pumps holding the syringes. The needles can be inserted into a fleshy area of the body and does not require having to find a vein. The whole process takes around two hours and has to be performed once a week. 

Michael and several other patients successfully administered this treatment with careful monitoring by the Papworth team and after approximately 3 years the drug became licensed and is now used in home therapy for patients all over the UK.

All treatment for CVID must be given regularly, and for life, as the immune system is something that doesn’t return once lost.

Michael would like to thank the team at Papworth now under Dr Helen Baxendale for their continuing support and care. He knows he owes them his life.

Jan 2017 update...

Michael hasn’t now received any form of treatment for his CVID for well over 2 years  (all under the control of Dr Baxendale) and at present his immunity levels have held stable which is hugely encouraging although bugs can still hit hard sometimes and a bout of shingles in 2016 wasn’t the nicest of events. However, it does seem that after 16 years of weekly treament things have nearly returned to ‘normal’, at the moment it’s hard to say why this is the case but it’s a step very much in a good direction!



© Michael Dann 2017