Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disease that affects the nervous system. It causes peripheral nerves and nerve roots (the sites where nerves are attached to the central nervous system) to become inflamed, and destroys the protective myelin sheath that encases them.
What causes CIDP is currently unknown. Symptoms lead scientists to believe the condition is probably autoimmune in nature.
It’s a serious diagnosis facing an estimated .005% to .007% of the global population, including some 30,000 Americans. The combined destruction of myelin and nerve inflammation leads to changes in the speed of the transmission of nerve signals, which slowly causes nerve tissues to break down. This can lead to weakness, muscle impairment, and even paralysis. It is sometimes thought of as the chronic form of Guillain-Barre syndrome (GBS).
As is the case with many rare diseases, it can be difficult for people with CIDP to find information about living with their condition. To help anyone struggling to find a place to begin, we’ve compiled a list of some online resources that can provide further support and information.
GBS/CIDP Foundation International
GBS/CIDP Foundation International was founded in 1980 by Estelle and Robert Benson.
Late the year before, Robert was diagnosed with Guillain-Barre syndrome – an autoimmune disease similar to and closely associated with CIDP. The couple’s struggles with the disease prompted them to form GBS/CIDP Foundation International. They wanted to provide a support group for anyone in the future who found themselves living with the disease.
The foundation operates chapters and fundraisers across the United States, and it’s one of the best resources for anyone with questions about CIDP.
If you’re looking for even more content, the foundation also operates its own YouTube channel. Videos are posted every few months or so, and include personal accounts, professional interviews, and footage collected from some of their fundraisers.
The Foundation for Peripheral Neuropathy
The Foundation for Peripheral Neuropathy is less specifically oriented than GBS/CIDP Foundation International, but it has a number of excellent resources for people living with peripheral neuropathy – a defining characteristic of CIDP.
Their website provides useful information about what therapy options exist for peripheral neuropathy patients, and can even help guide you with choosing a qualified neurologist.
Maintaining a healthy lifestyle can seem daunting with CIDP, but it is possible. The Foundation for Peripheral Neuropathy hosts a cool collection of wellness guides that can make it easier.
Living With Polyneuropathy
Living with Polyneuropathy is a small forum operated by Ben’s Friends – an American nonprofit that hosts a number of free patient support communities.
Though the website design may seem slightly dated, the people running the site and the people using it have proven to be loving custodians in the forum’s three years. There is a well-organized list of subforums to direct conversation about any aspect of life with CIDP – including areas where users can post doctor recommendations, ask for emotional support, or even offer prayers of healing.
Joining is easy, and users are relatively active. If you want to have discussions with other real people living with CIDP, online forums like this may be your best bet.
Reddit is a huge website where users can form smaller communities among themselves called “subreddits.”
/r/Guillainbarre is one such subreddit. It’s small, with just under 150 registered users, but active. Users are free to ask questions, share stories, news, or outside resources among themselves.
Though this community offers little in the way of supplementary health gadgets like the other sites, it is a well moderated community where real people gather to discuss life with GBS and CIDP with some degree of regularity. Combined with Reddit’s huge user base and integrated notification/messaging system, /r/Guillainbarre has the potential to be a useful resource for anyone hoping to have a conversation with other people struggling with CIDP.
Pharmaceutical researchers around the world are working on creating and refining CIDP and GBS treatments in the laboratory as you read these words.
This handy list, provided by GBS/CIDP Foundation International, includes detailed information about ongoing clinical trials for drugs intended to treat certain demyelinating conditions.
Note that clinical trials themselves are, by nature, a lengthy process. Any ongoing trial is liable to take years to complete, and may not even yield a product that works. They are obviously, however, of huge interest to patients and physicians alike.
The World is Smaller Than Ever
The internet can be a powerful tool in making rare diseases like CIDP less isolating.
Anyone with an internet connection can make a Facebook page for CIDP/GB support. The limiting factor in is participation – a CIDP forum with 150 users is big! 99% of the people who read this post won’t have CIDP or any other kind of polyneuropathy. In an age when posts can garner tens of thousands of likes or shares in a matter of hours, it can be difficult to find such small groups of people.
That’s why it’s the equal responsibility of healthy individuals to raise awareness for rare diseases like CIDP, and to help provide effective means of outreach and information for those affected.
That’s why, if you or someone you know is living with polyneuropathy, we encourage you to share your story with us! Every story is another step in advancing our understanding of CIDP and rare diseases like it.