This BLOG is created and supported by volunteers who work with the Vasculitis Foundation to support anyone with this disease.
October 13 Mtg. Minutes
The KC Chapter of the Vasculitis Foundation met on October 13, 2012 in the Fountain Dining Room of St. Luke’s Hospital. Jerry Niebaum, Chapter Leader, welcomed new members Denny & Ruth Hale and Michael and Cory Tiedeman. Denny was diagnosed with Churg Strauss syndrome since February 2012; Cory was diagnosed with Takayasu Arteritis.
Jerry told us about treatment for his Merkel skin cancer. He mentioned he and Judy were on vacation in Oregon when he found a lump under his arm. He called his doctor’s office and made an appointment for the day after they would get home from the vacation. That was good advice, rather than wait until a patient gets home and then tries to get a quick appointment. He says he is doing fine now.
Cory talked about her open heart surgery and then being diagnosed with the Takayasu’s arteritis which is considered an Oriental disease and also the surgery to remove her gallbladder. Sondra Schmidt and her son, Joe, attended. She is just recovering from a flare of WG/Granulomatosis/polyangitis.
Kelly Dougherty commented about her symptoms and how long it took to get the correct diagnosis. She gave her Dermatologist credit for giving her an accurate diagnosis.
We discussed how we can make it better for the newly diagnosed patients; one thing they learned is that they are not alone and that the VF is there to help them.
Joyce Kullman, Executive Director, talked about making more doctors aware of the Vasculitis diseases; she stressed the importance of working with the Vasculitis Clinical Research Consortium. Bob Schoonover is the only patient from the group attending today who is involved.
Jerry told about his Face Book and the “friends” he has met. It is another way to educate people.
The Vasculitis Foundation is restructuring the Web site.The goal is to have the new Web site ready in November.
The annual Awareness month will be May 2013; it is important for everyone to work to make more doctors aware of the Vasculitis diseases and therefore to more quickly diagnose patients. Joyce talked about the VF funding a Fellowship to a young doctor who in turn would teach other young ones. She commented that the experts now are all getting older and how important it is to educate the younger ones.
The next International symposium will be July 12, 13 and 14th in Philadelphia. Philadelphia is less expensive than some of the other locations considered. Joyce talked about the schedule; there will be sessions for children with a Vasculitis disease; a session for parents of young children who have a Vasculitis disease, there will be 8 rooms for break-out sessions. There will be expert doctors from around the world attending as well.
Jerry announced the VF will meet on December 8th at 1:00 p.m. at the VML building just north of the Broadway Bridge. Kelly works for VML and welcomes all of us to meet with her there. Parking is in front of the building which is all on one level and a most convenient place to get into.
Submitted by: Arlene R,. Kullman