Get the facts about life with CIDP

If you or someone you love has chronic inflammatory demyelinating polyneuropathy (CIDP), it's still possible to live a full and rewarding life. Thanks to new therapies and medical advances, people living with CIDP have new options to help them manage their disease.

What is chronic inflammatory demyelinating polyneuropathy (CIDP)?

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disorder of the nervous system. Though your immune system generally keeps you healthy by fighting off germs, with CIDP, your immune system does not recognize parts of your nerves and attacks them.

Specifically, the immune system mistakenly attacks your nerves’ protective myelin. When the myelin is damaged or removed, messages transmitted to and from the brain are disrupted and may never make it to their final destination.

Over time, this may cause gradual weakness and a loss of feeling in your arms and legs.

Other symptoms may include, but are not limited to:

  • Tingling or numbness beginning in the toes and fingers
  • Weakness of the arms or legs
  • Loss of reflexes
  • Fatigue

If left untreated, CIDP can cause permanent damage to the nerves.

What is myelin?

Nerves are responsible for sending messages to and from the brain, like when you want your hand to grasp an object or when your hand tells your brain the stove is hot. Healthy nerves are wrapped in a sheath called myelin, much like electric wires wrapped in rubber insulation. The insulation allows electric impulses to travel efficiently along.

How is CIDP diagnosed?

Diagnosis of CIDP is based on symptoms such as loss of sensation (numbness), abnormal sensation (tingling and pain), loss of reflexes, and weakness (difficulty walking, foot drop).

Tests may include nerve conduction and EMG (electromyography) (usually showing a demyelinating neuropathy), spinal fluid analysis (usually showing elevated protein with normal cell count), and blood and urine tests (to rule out other disorders that may cause neuropathy and to look for unusual proteins).

The number of new cases per year of CIDP is about 1 to 2 per 100,000 people, but as the disease can be present in a person for years prior to diagnosis, the prevalence reflecting the accumulation of cases over time may be as high as 9 per 100,000 in some areas.

Are there any materials I can review?

A list of resources is provided below. Simply click on the link below to view, download, or print your selected item.

Doctor Discussion Guide image

Doctor Discussion Guide

This guide will help you talk to your doctor about your condition, treatment options, and the unique features of Hizentra. Simply print this out and bring to your next doctor’s appointment.

View/Download PDF
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Hizentra Self-administration Video

Watch the Hizentra self-administration video to learn the step‑by‑step instructions on preparation, proper infusion techniques, and administration.

View video

Step-by-step instructions for Self-administering Hizentra

Step‑by‑Step Instructions for Self‑administering Hizentra

View/Download PDF

Tips for living with CIDP

The following tips will help people with CIDP

  • Work collaboratively with your doctor to manage your CIDP, and ask about treatments that can fit easily into your lifestyle
  • The effectiveness of therapy depends on many factors, including how early the condition was diagnosed and how quickly you begin treatment.
  • Relapse prevention is very important. Make sure you are monitoring your body for the return of symptoms. If you are pushing yourself too hard and feel a return of symptoms, give yourself a break, and make sure to inform your doctor of any significant changes in how you feel
  • Accommodations in the home may be needed to facilitate daily living activities
  • For more information, visit the GBS/CIDP Foundation International website at www.gbs-cidp.org

Organizations that can help

For more information, discussion boards, and support groups for people living with PI or CIDP, visit these websites:

Join us for a free, live educational program for CIDP patients and their caregivers!

These programs feature a presentation from a trained nurse who treats
CIDP and stories from a CIDP patient just like you. Watch a video below to learn more.

Join in person: Come to a free in-person event (with meal) for CIDP patients and caregivers.

Find an event near you

Webinar Wednesdays: Take part in our live webinar series at 7 PM ET, where you can ask questions and join in the discussion from the convenience of your home.

Register for an online event 
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