Story
GBS is short for 'Guillain-Barré syndrome' (pronounced Ghee-lan Bar-ray). It is an acute condition affecting the peripheral nerves, in which the body’s immune system attacks the myelin sheath (insulating coating of the nerves). This leads to the short-circuiting of the nerve signals which causes sudden weakness resulting in paralysis and a loss of sensation, often but not always with severe pain. The worst degree of weakness is usually reached within 4 weeks and always within 6 weeks. Recovery can take a few weeks or many months.
Some patients develop a similar but longer-lasting condition called CIDP (chronic inflammatory demyelinating polyradiculoneuropathy). CIDP, once known as 'chronic GBS', is now usually regarded as a related condition, as are a number of other variants, both acute and chronic. It is possible to recover from CIDP, but many will be affected for the rest of their lives and will require ongoing treatment. GBS/CIDP is neither hereditary nor contagious, nor is it age or gender-related.
Around 1,200 people are affected by GBS annually in the UK with a further 500 being diagnosed with CIDP. About 80% of those with GBS will make a good recovery, but unfortunately 1 in 10 people will die as a result of the condition and the other 10% may experience long term residual effects ranging from limited mobility or dexterity, to life-long dependency on a wheelchair.
The charity exists to provide support and information to patients and their families, to raise awareness of this condition and to attract funds for research. Sadly, as a relatively rare condition, GBS/CIDP attracts little interest from the major research funders and pharmaceutical companies, thus our contribution to funding research is of major importance.
Your help in supporting our work and ultimately helping families at this difficult time is greatly appreciated. To reach our target by the 100th anniversary would make a big difference to each and every person affected by the conditions.