VASCULITIS FOUNDATION - KC Chapter Meeting
Jerry Niebaum opened the meeting at 1:00 p.m. on March 15, 2008 at the Peet Center Conference Room at St. Luke’s Hospital in Kansas City, MO.
Attending were: Bob and Sharon, Mary and Julie, Jerry and Judy, Chad, Mary Ann, Richard, Dean and Ruth E., Tish and Guest Speaker, Angela Wright, M.A. of the Otologic Center in K.C.
Angela is the daughter of Vasculitis patient, Chad; she talked about the workings of our ears and the tests she does to determine the cause of the problems the patient is experiencing. Also, she talked about how some medications have side effects that can cause tinnitus or hearing loss. She talked about several hearing aids and how they have been improved during the last 10 years. She brought several and, offered to show them to anyone who was interested..
Mary shared the very good news that her sister, Julie had received a kidney transplant in January and is doing very well. We were all excited to hear Julie tell about her brother being the donor and because of that, she will not need so many anti-rejection drugs for the rest of her life. She is thankful she doesn’t need dialysis anymore.
Dean is a newly diagnosed WG patient from Olathe, KS.; his wife, Ruth, is a retired registered nurse. They were impressed that there were other WG patients who had been in remission for some time and are doing well.
Chad, Bob and Dean told about their experiences of going from one doctor to another before they were finally diagnosed.
Tish is the Mother of a 19 year old daughter with WG who is in college at Notre Dame; Tish knew about the VF organization for some time but said she was in denial that her daughter had a disease that there was not a known cure. Tish is interested in gene research . Her other daughter at age 11 was diagnosed with a Vasculitis disease; her sister also had a vasculitis disease when she was young.
There was a discussion about how the different medications used for WG affected different patients.
Jerry told about the 3 cancers he had removed from his forehead; the scars are fading. He was complimented on his well written article in the January/February 2008 issue of the Vasculitis Foundation Newsletter Jerry and Judy are planning a family vacation in Hawaii.
Because the VF Board of Directors was meeting this weekend in Kansas City, Joyce Kullman, Executive Director, could not attend the KC Chapter meeting.
Jerry asked for a show of hands of those who plan to attend the Symposium at the Mayo Clinic on June 7th, 8th and 9th. The discussion ended with his recommendation that as many as possible attend so they can hear from the different Medical Specialists all in the space of 3 days.
The next meeting of the KC Chapter will be June 21st tentatively planned to be at the Peet Center Conference Room of St. Luke's Hospital if it is available.
Meeting adjourned at 3:00 p.m.