JULY 2004 MEETING NOTES

TOPIC:  “SELF-ADVOCACY FOR PEOPLE WITH MIGRAINE HEADACHES”

Cliff Kalibjian was the guest speaker for the July 13, 2004 meeting of the East Bay Headache Support Group.  The meeting was held in the Hanson Room at John Muir Medical Center with 20 in attendance.

Cliff Kalibjian is the owner of Mr. Health Search, a medical information research company that specializes in customized research on any medical condition or health topic for consumers and professionals.  He is also the author of Straight from the Gut: Living with Crohn’s Disease & Ulcerative Colitis (O’Reilly & Associates, 2003).  This book is comprehensive guide for people touched by ulcerative colitis and Crohn’s disease, two serious illnesses that cause inflammation in the digestive tract.  As someone who developed Crohn’s at the age of 13, Cliff’s mission now is to help those with chronic illnesses improve the quality of their lives through education and self-advocacy.

Cliff began his presentation with the statement that “Each patient must become educated and become a self advocate for their health.”  When he was 13 and in the eighth grade, Cliff began experiencing bloody diarrhea and was seen at the local university hospital, where his condition was diagnosed as ulcerative colitis, a chronic disease.  Five years later the diagnosis was changed to Crohn’s Disease.  This causes pain, weight loss, diarrhea, fever, malaise and varies in severity.  As a young teen his condition was mild.  During his teen years he was placed on Prednisone, anti-inflammatories, and chemotherapeutic agents.  He was stable until his early 20’s, but then his condition worsened and Cliff had to be treated with a high dose of steroids (TPN.).  He would go through cycles of worsening and then some improvement. 

Cliff started researching the latest research on “conventional” as well as “non-conventional” treatments for his condition, and while doing this, he found that there was a specialty of independent information research.  Cliff contacted a woman who was very well-known as an information research professional to find out more.

During this time he decided to have a colectomy to find relief from the Crohn’s disease.  And within three months he was able to go off all medications.  But Cliff developed an intestinal blockage ten months later and had to have a portion of his small intestine removed.  He told the audience that since then he’s been doing well.

Cliff was always interested in research and needed to learn about treatments for himself, and so he became an independent health information professional. 

Advocate means “pleading for another’s cause.”  He said that anyone with chronic illness needs to be a self-advocate, or advocate for yourself.  One can have healing on an emotional and/or physical level.

Cliff then listed a number of things people with chronic disease need to do: 

With the advent of the Internet, an ordinary person is capable of researching medical conditions easily.  There are a number of Web sites out there:  some are good, some are bad, and some are trying to sell something.  A good starting point is www.pubmed.gov. 

Cliff suggested the Valley Care Health Library as a source of medical information.  You can ask your doctor to give you a request or prescription to use the medical library.

Medical Subject heading or MeSH.  Can do subject and subcategory searches using MeSH.  Also (for a fee) embase.

US Government – see list.

Google – search engine.

CoQ10 – general antioxidant

Riboflavin

Magnesium

Diet

Feverfew

Pub Med Gov

MeSH database

Shows how to research in pub med

Em base

Dialogue

Pubmed.gov

Medlineplus

Ccclib.org

Health Intentions – Mr. Health Search

Attached is a hand-out Cliff gave to the audience members, in which he describes how to perform a sample search using PubMed MeSH Browser. 

The intention of the East Bay Headache Support Group is to provide information and resources for headache sufferers.  It does not provide medical advice, which should be obtained directly from a physician.