Guillain Barre & Me by Michael McCarthy

Nearly 20 years ago, I had Guillain Barre Syndrome.  Though it happened a long time ago, memory of it comes back to me like it was yesterday.

Two weeks ago I got a call from the hospital, asking if I could come in and talk with the family of a current Guillain Barre patient.  It had been a long time since I had visited with a family and I wondered what had changed and how could I be of help.  This is about what I learned.

I was reminded that patients and families in this situation have questions.  Some examples are:

  • Will I die?  Will I walk again?  Can I ever get back to work?  I have a family that depends on me and will I ever be able to support them again?
  • What will happen to me?
  • What is happening to my body?  How did I get this?

If you are a nurse, you may see Guillain Barre once, every couple of years.  It doesn’t seem to happen that often, and it varies in severity.  You do the treatments and monitor the vitals, and do the best you can with this odd and insidious condition.

If you are a doctor, you may have seen this a few times.  There are treatments to prescribe and they are somewhat limited.  This story is about the person lying in the bed and the families that have to deal with all the uncertainty of recuperation… Continue reading Guillain Barre & Me by Michael McCarthy

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Risk Factors of Guillain Barre Syndrome

There are many common risk factors related with Guillain Barre Syndrome like HIV (the virus that causes AIDS), Mononucleosis and Hodgkin”s disease. Some other risk factors are respiratory failure, respiratory muscle paralysis, complete paralysis, permanent muscle weakness, Dysautonomia, permanent numbness, and recurrent attacks of Guillain Barre Syndrome. There are few significant similarities between patients treated with plasma or blood exchange and patients with Guillain Barre Syndrome by intravenous immune globulins with combined dose of methylprednisolone. Consequently it is recommended that treatment related clinical fluctuations can cause extended immune attack, it may do more damage to already worse condition. However still it is not identified that the fluctuations are associated to treatment modality.

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Famous People who suffered Guillain Barre Syndrome

Here are few notable sufferers of Guillain Barre Syndrome:

Andy Griffith, actor

Rachel Chagall, actress

Joseph Heller, author

Franklin D. Roosevelt, U.S. president. In 2003 doctors concluded that Roosevelt”s paralysis, long attributed to poliomyelitis, was actually Guillain-Barré syndrome.

Len Pasquarelli, sports writer and analyst for ESPN

Markus Babbel, German soccer player

Serge Payer, Canadian-born professional hockey player.

Morten Wieghorst, Danish soccer player played for Celtic and Brondby

Lucky Oceans, Grammy Award winning musician

William “The Refrigerator” Perry, former professional American football player with the Chicago Bears was diagnosed with GBS in 2008.

Tony Benn, British politician.

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Tests for Guillain Barre Syndrome

There is few tests that are usually performed to get the accurate findings of Guillain Barre Syndrome. These tests include reflex tests, physical exams, protein CSF test by a spinal tap, lumbar puncture, antibody blood tests, NCV test (nerve conduction velocity) and many nerve function tests.

More detailed informations about the test are under constructions.

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Guillain Barre Syndrome Organizations

There are many organization that offer support, help and more informations for people that suffer from GBS. Here are few leading Guillain Barre Syndrome organizations:

1- Autoimmunity Community
None
None None
Phone #: (91-9) -552-9057
800 #: N/A
E-mail: bandrews@autoimmunitycommunity.org
Home page: http://autoimmunitycommunity.org

2- Autoimmune Information Network, Inc
PO Box 4121
Brick NJ 08723
Phone #: 732-664-9259
800 #: N/A
E-mail: autoimmunehelp@aol.com
Home page: http://www.aininc.org

3- Christopher Reeve Paralysis Foundation
500 Morris Ave
Springfield NJ 07081
Phone #: 973-379-2690
800 #: 800-225-0292
E-mail: info@crof.org
Home page: http://www.crpf.org,

4- European Society for Immunodeficiencies ESID
C/o Dr. Esther de Vries
Hertogenbosch None 5200 ME”s
Phone #: +31- 73–6992965
800 #: N/A
E-mail: info@esid.org
Home page: http://www.esid.org

5- GBS/CIDP Foundation International
The Holly Building, 104 1/2 Forrest Ave.
Narberth PA 19072
Phone #: 610-667-0131
800 #: 866-224-3301
E-mail: info@gbs-cidp.org
Home page: http://www.gbs-cidp.org

6- Guillain-Barre Syndrome Foundation of Canada, Inc.
PO Box 42016
Markham, Ontario None L3R 5R0
Phone #: 905–64-0-0073
800 #: N/A
E-mail: keast@sprint.ca
Home page: http://www.gbs-cidp.org

7- Guillain-Barre Syndrome Support Group
Lincolnshire County Council Offices
Lincolnshire Intl NG34 7EB
Phone #: 015-29 -304615
800 #: 080-0 3-74803
E-mail: admin@gbs.org.uk
Home page: http://www.gbs.org.uk

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