My Dear Friend,
We are not some big fancy support group. We are just people caring for people and we want to help you in any way we can. We know how frustrating and frightening it is knowing that you or someone in your family has such a rare disease.
A very serious disease has struck, and we will be here to give you all the support we can through this difficult time. We know the feeling of isolation and fear of the unknown with you or someone in your family having Wegener’s. This is normal when dealing with a rare disease like we have. Know that long-term remission can be obtained; there is hope. You must believe this.
This disease will be a test of your love for each other as a family and a test of your faith. It will take every ounce of positive energy that you have. It will be just as hard on the family as it is on the Wegener’s patient; WG will become a part of your family and a part of your lives. I know the tough time my husband had coping with a “sick” wife. When both realize that, you will be able to get through even the toughest times, and your love will grow. You must keep a positive outlook.
Methods of treatment for WG can help — much more than 10-15-20 years . There is no cure. However, the good news is that long-term remissions can be obtained, and you can return to a “normal” life. The only difference is that “normal” is in quotes, because you can never turn your back on this disease.
When it comes time for your doctor’s appointment, you might entertain the thought to skip it since you are feeling good. You must always keep it in check; go for the appointment. In one letter, a lady said her doctor never used the term “remission”; rather he used the term “inactive Wegener’s.”
Let me fill you in a little. My name is Marilyn Sampson (d.o.b.10/6/33), I became ill with WG in 1977, when a lung tumor was found. The upper part of my right lung was removed then; but the disease was not diagnosed until 1981, four years later. By that time I had developed saddle-nose deformity with severe sinus involvement, joint pain, hearing loss with severe vertigo and vomiting, and double vision.
I am a Registered Nurse, but had to resign because of my hearing loss.
I knew the isolation of having Wegener’s and the frightening feeling of having a disease that no one seemed to have heard of.
So I decided to start a support group after I met two other WG patients – Connie Barnett and Fern Thompson. I also met Vivian Muellner and Anne Limeres at the Mayo Clinic. In fact, Vivian and I had our noses reconstructed the same day. Next, my doctor at Mayo Clinic, Dr. T. J. McDonald, referred me to Myrna Swart, the mother of his patient, Carol Swart.
Myrna wanted to start a Wegener’s Granulomatosis support group chapter in the Los Angeles, California area. So we began to write. It was at that time I decided that I better get serious about this support group, and I wrote the first Wegener’s pamphlet. I filed for a support group in May 1986 and the first mailing was in October 1987. That is how this support group began.
Since that time we have really been growing, especially after news of the group appeared in the notices of the Annals of Internal Medicine, also in ‘Letters to the Editor’ in the Saturday Evening Post, and the Ladies Home Journal. We have had inquiries from patients, specialists and clinics in Africa, Australia, Canada, England,France, Germany, Greece, Ireland, Israel, Italy, Mexico, Netherlands, New Zealand,Norway, Puerto Rico, Scotland, South Africa, Sweden, and every state in the Union. I never dreamed there was such a need for a WG support group.
Somehow just knowing that someone knows what you are going through seems to help. Because our numbers are still relatively few, and there are not support groups in every city as yet, we ‘hold hands’ by writing to each other and by phone calls — WG chapters have began in some areas, and other small groups are meeting across the country to support one another.
Dr. Steven Weiner wrote to me when he saw the notice of the WG Support group in the Annals of Internal Medicine. He is a researcher at UCLA and was working on a Wegener’s Granulomatosis research project. (Isn’t that wonderful to know?) I put him in touch with the L.A. chapter and he spoke at their June 1988 meeting. I was privileged to meet Dr. Weiner and hear him speak and answer hours of questions. He was very informative and very positive. He stated that, like cancer, Wegener’s is being treated with various drugs in the hope that, as the testing continues, they will find which ones are most beneficial and which of the newer drugs will help us. Dr. Weiner stressed a positive outlook, a healthy diet, and some sort of daily exercise, even if it is walking around the block.
We know, too, that while you are on Cytoxan or any of the other chemotherapy drugs, you should drink plenty of water – two quarts or more, provided you do not have kidney involvement. This keeps the kidneys flushing out the Cytoxan. Check with your doctor to see how much water is recommended for you.
We had the first WG Support Group meeting in Kansas City in October 1987.
We are a non-profit organization and are incorporated. We received notice of tax exemption from the IRS, and all donations are deductible. (United Way donations can be designated to go our organization. We also are a member of NORD (National Organization for Rare Diseases) and AARDA (American Autoimmune Related Diseases Association, Inc. We have by-laws and international board members; and we have voted dues of $20 per year. This goes toward printing and mailing of the Newsletter and its expenses as well as building awareness. The Newsletter is sent every other month. Articles, suggestions, tips or questions are always encouraged.
In December of 1987, my husband and I attended the first Los Angeles WG support meeting. Since that time we have attended first meetings in Cleveland, Ohio; St. Louis, Missouri; Watertown, South Dakota; Eugene, Oregon; Minneapolis, Minnesota; and Raleigh Durham, North Carolina. Other chapters that are forming write and call others in their area and visit with one another, but may not yet have regular meetings. Since my husband is a retired airline Captain and we are able to fly on passes, we hope to be able to fly to the first meeting of each new Wegener’s granulomatosis Support Group chapter as they develop.
Dr. Friederick Wegener, whom the disease is named after, died in July 1990 after a severe stroke. He lived in Germany. His widow, Mrs. Ulla Wegener, has written to us several times. She sent an informative book about Dr. Wegener’s life and his work for display at our recent seminar.
Believe me when I say you and your family are not alone, as we thought we were. And, believe me when I tell you there is hope! As was stated, we are just people caring for people; and we want to be your friends. We want you to know that we are here for anything; if you need anything at all, or need to vent your frustrations to someone. We do not have all the answers; but we want to give you hope, and we want you to fight with everything you have. We want you to believe and know you can lick this disease and survive. We know how you and your family feel — so alone with a rare disease; but know that all of us in the support group are here to help you cope.
Let your doctors know that they are free to contact any of our medical consultants. We are very proud to have such a prestigious list of medical consultants from across the country. If you would like your doctors to be on our mailing list to receive the Newsletter, please send us their names and addresses.
Please fill out the New Patient Form and return this information to us for our computer database. We would like to know what involvement there is, when you became ill, and when the diagnosis was made, and also your birth date. We do hope to hear from you soon.
Keep your spirits up! Be positive no matter what the situation is. Read anything positive you can get your hands on. Start with the books “Getting Well Again” by Stephanie and 0. Carl Simonton, M.D.s., and “Love, Medicine and Miracles” by Bernie S. Siegel, M.D. You might even want to purchase positive tapes from the bookstore and go to sleep by them. Some of us still use nightly positive tapes.
Remember, we are here for you in any way we can help you. God bless you and your family. We send our love and will keep you and your family in our thoughts and prayers.
My Love and Prayers,
Marilyn Sampson, RN
P.S. Marilyn Sampson passed away on October 7, 1997 after a long bout with cancer (not caused by Wegener’s). No one can say any better what she said in this letter, so we choose to let her words of encouragement continue to introduce this patient information to you.
Since Marilyn Sampson wrote this letter about the organization, much has happened. We are now over 4,000 strong across the world, and while supporting patients is still of the utmost importance, the Vasculitis Foundation now has a staff, a Research Program, a regularly published newsletter, a growing online presence, and much more… We believe our founders would be very proud of how the Vasculitis Foundation has grown and matured in a relatively short time.