Spreading the word about GBS/CIDP…
Aimee, Ron, and all:
I send a letter to the Editor of my local newspaper at least twice a year, usually every May (GBS awareness month), and again in September, just prior to the flu shots. I find this a very effective way of spreading the word about GBS. Just after the letter below was published last month I got a phone call from the aunt of a young man that had GBS.
[B]May: Guillain-Barre’ Syndrome Awareness Month[/B]
After the near eradication of polio, Guillain-Barre’ Syndrome (GBS) is now the most common cause of acute flaccid paralysis worldwide. GBS is a rare inflammation of the nerves, caused by the patient’s body producing antibodies against the peripheral nerves (all nerves outside the brain and spinal cord). The syndrome is typically observed after an infection in the lungs, diarrhoea, vaccination, surgery or childbirth. Patients generally experience one or more of the following symptoms, caused by nerve damage: Pain, sensory irregularities, progressive weakness leading to paralysis or irregular function of the body’s autonomous functions. The disorder is characterised by progressive symmetrical paralysis and loss of reflexes, usually beginning in the legs.
The inflammation damages portions of the nerve cell, resulting in muscle weakness and paralysis with sensory disturbances. The damage usually involves loss of the nerve’s myelin sheath (demyelinating), which slows the conduction of impulses through the nerve. The damage may also involve destruction of the axon part of the nerve cell (denervating), which blocks conduction through the nerve. This damages the nerves that affect the patients legs, arms, lungs, throat, heart or eyes. Severe cases of GBS require a tracheotomy with a respirator for breathing and must be in ICU. Many patients are paralyzed for many months and require many more months of physical and occupational therapy.
GBS is an autoimmune disorder typically causing rapid weakness and people generally have a good recovery, usually with some residual nerve damage. One of the main problems is the lack of experience of general doctors, emergency doctors, and some neurologist in recognizing the symptoms of GBS quickly so that treatment of either IVIG (Intravenous Immune Globulin) or plasmapheresis (a blood “cleansing” process) can be started to slow/stop the autoimmune attack on the myelin sheath and shortens the course of GBS. GBS affects about 2 to 4 in 100,000 people each year.
The key point is that people with GBS can look many different ways and there is not one GBS picture. Doctors need to be made aware of the presentation of GBS through education. For information about Guillain-Barre’ Syndrome just Google up “all about GBS”. There are thousands of people that get GBS each year, or the chronic type of GBS called CIDP: Chronic inflammatory demyelinating polyneuropathy. This web site can help doctors and other health providers learn to recognize the symptoms of GBS, treatments, and residual complications of people with GBS.
I got GBS after a flu shot in 1996, and during complications with my poor recovery it was determined by University of Louisville Neurologist that I had chronic GBS, or CIDP. My immune system is still producing antibodies that attack my myelin sheath today and I get regular treatments of IVIG that stop the autoimmune attack. Researchers from the University of Texas determined in 2004 that it was probably GBS, and not polio as thought, that paralyzed President Franklin D. Roosevelt.