Demyelinated not Destroyed

For various reasons, I feel it’s best to start off my discussion of the many charities out there for demyelinating diseases with the GBS-CIDP Foundation International .

Who are they?

The GBS-CIDP Foundation International is a charity that exists to inform the public, encourage research, and provide support for those living with Guillian-Barre Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, and any of their variants.

Originally founded in 1980 by Robert and Estelle Benson, the GBS-CIDP Foundation International has grown from a grass-roots effort to an international organization with over 23,000 members in 160 chapters on five continents.

What can they do for me?

Anyone that goes to the website and signs up to receive information on their local chapter will receive a packet in the mail that contains A LOT of information. One of the items I received in my packet was a copy of the book “Overview for the Layperson”. This 76 page booklet has answers to just about every single question someone newly diagnosed with Guillian-Barre Syndrome or Chronic Inflammatory Demyelinating Polyneuropathy would have. It has been a God-send to me as I search for answers and information to living with CIDP.

Another wonderful asset of the GBS-CIDP Foundation International is their forums. The members are educated, supportive, and very helpful. If you’re ever feeling depressed about anything, you can count on them to rally around you and cheer you up. If you have any fears or worries, they will reassure you as best as they can through information and sharing their experiences with you. The forums are also fairly active so it’s unlikely you’ll be left hanging while waiting for a response for long. Hands down, the forum members are simply the best.

Every year, the GBS-CIDP Foundation International also hosts a symposium where patients, caregivers, and doctors can all get together to share information on the latest treatments, research, and simply make new friends. While I haveyet to personally go, many of the members look forward to attending the symposium every year.

A lot of inspirational and motivational stories can be found on their website, particularly dealing with individuals diagnosed with GBS. Reading through any of the stories posted front and center on their website will give anyone the hope they need for the future.

Overall

The GBS-CIDP Foundation International is really a wonderful organization. The amount of information and support they freely give to those who need it is astounding. Their forum members are simply some of the best, most caring individuals I have ever been blessed enough to meet online. If you or anyone you know is living with Guillian-Barre Syndrome or Chronic Inflammatory Demyelinating Polyneuropathy, definitely check them out and donate to the cause !