Reply To: GBS/CIDP Survey
Just google “May GBS Awareness Month” and there is a lot of information. Concerning a letter to your local newspaper:
Example Letter concerning May – Awareness Month GBS-CIDP
The Evening Journal
200 Maple Street
Nowhere TN 40000
RE: GBS-CIDP Awareness Month – May
May is National GBS-CIDP Awareness Month. Even though it is rare, (2-4 people in 100,000 diagnosed per year), there are a number of patients in our community that have been diagnosed with GBS/CIDP – Also known as Guillain-Barré Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy. The syndrome is named after the French physicians Georges Guillain and Jean Barré, who described it in 1916. Because it is French, it is pronounced ghee-yan bah-ray.
GBS/CIDP are an inflammation of the peripheral nerves (all nerves other than the spinal cord and brain which is the central nervous system) and in most GBS cases, is followed by a demyelinating attack on the coating that protects the nerves called the myelin sheath. About 70% of the people that get GBS recover with some residual effects if early treatment of either IVIG (known as intravenous immunoglobulin) or plasmapheresis (known as a plasma exchange) is given to slow or stop the attack on the myelin sheath, preventing additional damage to the nerves.
Everyone is familiar with an electrical wire. The plastic coating that protects the copper wire is much like the myelin coating that protects the nerves – The copper wire is much like the nerve. If the plastic coating is stripped away leaving the copper wire exposed without insulation, there will be short circuits. This happens when the myelin is stripped from the nerves…electrical impulse signals from the brain to the trunk and limbs do not receive signals, and parts of the body can not move, leaving the person paralyzed because there is no insulation for electrical conduction in the communication path, and all the electrical impulses short circuit. The sensory glands and organs are also affected and a feeling of tingling, numbness and pain also occur with the loss of the ability to actually “feel” textures, or determine sizes such as the difference between a quarter and a penny.
Guillain-Barre syndrome is Today’s number one Worldwide cause of acute flaccid paralysis. The problem is that General Practitioners, Emergency Room Doctors, and some Neurologist do not recognize the symptoms of GBS. A quick diagnosis with fast treatment of either IVIG or plasmapheresis will determine the extent of damage to a patient’s myelin sheath and their recovery time…it could mean the difference between months or years, and the amount of residual damage to the patient. The secret is a better education of the symptoms of this devastating and catastrophic disease to all doctors so a quick diagnosis can be made and treatment can be started as quickly as possible to prevent long term residual damage.
This disorder can develop in any person at any age. Every case is different and can be difficult to diagnose. Just imagine waking up one morning unable to walk or stand. This can progress to paralysis of the breathing muscles, making it impossible to breath on your own, then total paralysis unable to communicate. Usually months of hospital care is necessary, all the time not knowing if and when you will recover. Life as you knew it is gone – You are “locked out” of the life you had.
The difference between GBS and CIDP – GBS is an acute attach, meaning it comes on suddenly, within a few days or 1-2 weeks, and in most cases patients will recover with residual affects after a period of several months of therapy. CIDP is a chronic type of GBS, meaning it comes on over a period of time, usually weeks or months, and in many cases patients do not recover, and will go through years of treatments – some with steroids, others with IVIG, and some with immune suppressants.
With over 40,000 former patients, Support and Information is available from the GBS-CIDP Foundation International: Address: GBS-CIDP International Office, The Holly Building, 104 1/2 Forrest Avenue, Narberth PA 19072 (www.gbs-cidp.org) or you can contact by Phone (610) 667-0131.
100 Anywhere Street
Sometown, PA 00000