My hunband Paul was diagnosed with CIPD 18 months ago, life has changed so much in this time.  For those of you who know Paul he was into his fitness, life and sole of a party, loved playing the drums and kicking a football around with Taylor.  Enjoyed  a cheeky dance and was known as happy feet!! Would love winding up Brooke and going on roller coasters!  Now he struggles with every day tasks, climbing the stairs is like climbing a mountain some nights.  He works hard and suffers for this, spending most of his free time trying to combat chronic fatigue.  He describes waking in the morning as if someone has filled his body with concrete, his muscles going into spasm causing pain.  Currently he receives IVIG for 3 days every 8 weeks, this treatment makes him feel ill, where he is in bed for days afterwards with headaches, nausea and vomiting, not having this treatment is not an option! Before this he was struggling to do simple things such use cutlery and clean his teeth.  This is Paul’s new life!!! It’s hard, I see him at his low points and it breaks my heart!! Paul won’t admit this to anyone and puts on a brave face, he is hurting !! 

Many of you will never have heard of this horrible disease,  Chronic inflammatory demyelinating polyradiculoneuropathy(CIDP) is a rare type of autoimmune disorder. In an autoimmune disease, the body attacks its own tissues. In CIDP, the body attacks the myelin sheaths. These are the fatty coverings on the fibers that insulate and protect the nerves. If left untreated 30% of people will end up requiring a wheelchair to get around. 

Guillain-Barré syndrome is an acute autoimmune condition affecting the peripheral nervous system. It causes the nerves in the arms and legs to become inflamed and stop working, often leading to paralysis. An estimated 1-2 people per 100,000 are affected by GBS each year with a further 1-2 per 200,000 being diagnosed with CIDP, a chronic variant of the syndrome. About 80% of those with GBS will make a good recovery, but between 5-10% will not survive and another 10-15% may experience long term residual effects ranging from limited mobility or dexterity, to life-long dependency on a wheelchair.GAIN is the only national organisation dedicated to supporting people affected by these conditions throughout the UK and Republic of Ireland.What we do: Help people understand and manage GBS, CIDP and the associated variants Promote and facilitate both clinical and non-clinical research Raise awareness of the conditions and the charity