CIDP

The story of Yvonne

I was diagnosed in 2016 with CIDP, chronic inflammatory demylinating polyneuropathy

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare neurological disorder in which there is inflammation of nerve roots and peripheral nerves and destruction of the fatty protective covering (myelin sheath) over the nerves. This affects how fast the nerve signals are transmitted and leads to loss of nerve fibers. This causes weakness, paralysis and/or impairment in motor function, especially of the arms and legs (limbs).

It has taken years to reach this diagnosis, many tests and still to this day we have no idea Why i have this disease, what brought about this change in  my body, i have a diagnosis of having a very rare antibody, so rare in fact they have no name for it.

The impact CIDP has had on my life has been immense, it’s a very lonely disease, my body has to battle daily, with the everyday things we take for granted, simple things like brushing my teeth, can leave me in extreme pain, the tiredness, weakness at times, makes me want to give up…

More research is urgently needed, my life now revolves round monthly trips for 5 days in hospital for Ivig treatment, my future plans now gone, life has come to an abrupt stop

 

*Find others with Chronic Imflammatory Demyelizing Neuropathy (CIDP) on RareConnect, the online platform for people affected by rare diseases.