The Kansas City VF Chapter met at the VML building on December 17, 2011; the members were most appreciative to our newest member, Kelly Dougherty, an employee of VML, who arranged for us to use the facility. Parking was within a few feet of the entrance and the meeting room was just a few feet inside.
Attending the meeting were Jerry and Judy Niebaum, Kelly Dougherty, Bill Spink, Bob and Sharon Schoonover, Mary Ann Quick , Glenn and Arlene Kullman, Joyce Kullman and Karen Sampson Higgins and her husband, John.
Kelly has Bechet’s disease and talked about the symptoms and treatment. Several members suggested she find a physician, who has experience with Bechet’s disease.
Joyce talked about the ½ day symposium to be held in Kansas City on May 5th; she believes the cost to attendees will be in the $25.00 range. At this time, she is talking to several experts in the Vasculitis field to address the group.
Also, there will be a one day symposium in Chicago on Saturday, April 21st and one in Atlanta on July 21st. It will be less expensive for attendees to travel to one of these locations for a one day event than to travel to a multi-day conference.
Jerry introduced Karen Higgins who, in turn, introduced her husband, John. Karen is an RN and is working at the former Spelman Hospital in Smithville. It is part of the St. Luke’s hospital system.
She came to tell us about her Mother, Marilyn Sampson, who started the Wegener’s Granulomatosis Support Group. She gave a short history of her family; her Dad, Bob, is a retired pilot; her Mother was an RN also. Karen has 2 brothers, Tom and Ty and one sister, Julie. Karen and her husband, John, have a 16 year old son, Craig. Julie has 3 sons, Tom has 4 sons, and Ty, who lives in Chicago, doesn’t have children.
Marilyn graduated from Nursing School and shortly thereafter married Bob. They lived in Gladstone, MO for a time and then moved to a farm in Platte County. She told how it was when the cattle would get out during the night and they would get a call about it. The children would get up; round up the cattle and get them into the corral. Bob was a pilot and was out-of-town frequently; therefore Marilyn and the children were responsible for the farm.
In the late 1970’s Marilyn became ill; doctors could not figure out what the problem was until1981. Dr. Richard DeRemee diagnosed the illness as Wegener’s Granulomatosis. Marilyn then met Dr. Nabih Abdou, who became her doctor as well as adviser for the Support Group, which she founded later.
Marilyn met a WG patient at Mayo Clinic in the early 1980’s; they started corresponding; then they heard of another lady with WG and Marilyn wrote to her. By that time, Dr. DeRemee and Dr. Abdou gave Marilyn the names of patients, and she wrote to them. This was before word processors so she typed the letters. She began finding literature relating to WG; she copied it and began mailing it to patients.
In 1986, she met two WG patients, Fern Thompson and Connie Barnett; this was the start of the Wegener’s Granulomatosis Support Group.
She began writing a Newletter; she’d get it printed and friends would assemble and address it;. This activity was at Marilyn’s kitchen table in Platt City, MO. The post office had just started requiring bulk mail to be sorted by zip code; that was the last step before Marilyn took them to the post office.
Karen talked about the dresses her Mother sewed for her and Julie; they always had new dresses for the school dances. She made bridesmaid dresses when Karen and Julie were planning their weddings.
After Marilyn’s Dad died, she would fly once each month to Florida to help her Mother. Eventually, , her Mother moved to Marilyn’s home where she lived for several years. She was legally blind, and Marilyn had a hearing problem but they enjoyed going to the movies. They sat in the back row of the theatre; Marilyn told her Mother what she saw, and her Mother told her what she heard; they laughed about the good times they had.
Marilyn did all these things while she was ill; she would drink a gallon of water a day so that her kidneys would not be damaged by the strong medication she was taking.
Her oldest grandson, Jay, came to live with his grandma and grandpa when he was in the 5th grade. She realized he was behind in his school work so she worked with him that year to get him caught up. About that time, home computers were just becoming available; Marilyn got one and was learning to use it. Once in a while, she would have a problem and Jay would help her after school. Her friend and Pastor, Father Wm. Dineen, was a computer whiz and would lend a hand if Jay couldn’t solve the problem.
Marilyn asked Iva Roe, another WG patient, to help her and they became dear friends as well as co-workers.
Karen shared her Mother’s photo albums, cookbooks and memorabilia. Marilyn died of cancer on October 7, 1997.
Refreshments of Christmas candies and cookies were served..
The next meeting for the KC Chapter will be May 5th at the symposium. Location and details for the symposium will be forthcoming.
Submitted by Arlene R. Kullman