VASCULITIS FOUNDATION
KC Chapter Meeting
Jerry Niebaum opened the meeting at 1:00 p.m. on March 10, 2007 at the home of Bill in Parkville, MO.
Attending the meeting were
Brandi is a student at the University of Central Missouri. She talked about the roving pains she had and Julie was surprised to hear that another person had experienced them. Bill, Chad, Jerry also experienced the roving pains. Not all rheumatologists agree that roving pains can be a part of Wegener’s Granulomatosis.
Chad mentioned he is feeling
much better now. He is back to walking
and is up to ˝ mile each day. He is
interested in attending stress management classes and Kay, and RN, said both Research
and Menorah hospitals in
The opinions voiced were that stress management and good nutrition were important for better health. Another suggestion was to learn low-impact yoga as a way to manage stress.
Brandi said she was ill for a year and saw a number of physicians but none diagnosed her illness as Wegener’s Granulomatosis until she saw Dr. Abdou ; he gave her the diagnosis and she started medications. She appreciated Dr. Abdou writing to each of her doctors explaining the diagnosis of WG.
Julie was ill a year before she was diagnosed last November. Meanwhile, her kidneys failed and she is now on dialysis. She asked how to qualify for a kidney transplant. Joyce offered suggestions and mentioned that one of our members had received a transplant even though she had WG, This patient lived a full life for a number of years.
Several other WG members have had successful transplants .
Bill also has Scleroderma and Reynauds diseases. Richard talked about the residual effects of the stroke he had many years ago as being more of problem now than WG.
Questions asked were if stress could cause WG in teenage girls and why are so many young children getting WG.?
We were encouraged to take VF brochures to our doctors offices
All the attendees commented how attentive and concerned Dr. Abdou and his office staff have been.
Budget cuts by Congress for NIH, National Institute of Health, have left their budget flat.
Joyce urged everyone to contact their Senators and Representatives and ask them to restore the money to NIH so they can resume research .
In 1997 the Wegener Granulomatosis Assoc. did a survey of their patients and the results were published in 2002 in THE JOURNAL OF RHEUMATOLOGY.
Vasculitis Foundation is preparing to update the survey; information will be available in the NEWSLETTER.
Dr. Simonivitch of Toronto University is doing a DNA Survey.
Mary Ann gave attendance prizes; items such as a cap, bag, shirts, etc. from the VF Store at the office.
Refreshments of fruit and sugar free cookies were served.
The next meeting of
the KC Chapter will be on June 9, 2007 at Mill Creek Dining Room at St. Luke’s
Hospital in
Jerry will ask his friend, a physician, to meet with us to discuss nutrition and the Atkins diet in regard to good health and diabetes.
Arlene R. Kullman