A Welcome Letter from Founder Marilyn Sampson - October 1995

 Marilyn SampsonMy 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 at the Mayo Clinic -- Vivian Muellner and Anne Limeres. 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

P.S. Marilyn Sampson, R.N., passed away on October 7, 1997 after a long bout with cancer (not caused by WG). 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. 

Living Our Dreams - A Message from Iva Roe

Iva Roe

Retired President/Executive Director of the WGA

July 2000

Wally Van Dort, a Wegener’s patient wrote in the March 2000 Australian Newsletter, “Most importantly keep well so we can enjoy those dreams and pleasures in life that we strive for.” 

I am a WG patient who has seen dark times and knows what it is to feel desperate about ever being able to be “normal” again.  Wally’s words reminded me how important it is to remember that we had, and still can have, dreams!  And it inspired me to write that I am now fortunate enough to be living one of my dreams.

Since I was very young I wanted to help people; and the interesting thing is that having Wegener’s granulomatosis allowed me to reach that dream. 

I was diagnosed in January 1991 when my kidneys failed after years of sinus infections and severe flu-like symptoms for a month.  My story is a long sad tale, like many others with WG, before and after diagnosis and three years on dialysis before I got my kidney transplant.  But it was just that special experience, together with my business and professional background, which brought me to help Marilyn Sampson in her office as I was regaining my health after the kidney transplant. 

My unique combination of skills and experience came together with the need for patients to talk with someone who understands WG.  Marilyn’s work in starting the support group for WG patients and their families, and raising awareness of WG in the general public and the medical community, gave me the outlet for my dream, even though it all happened “through the back door” of my life.

Every Wegener’s patient has a history and a life before WG, though it may seem to be at a standstill sometimes while dealing with the disease.  But those who have come to remission or “quiet disease” or whatever term works for you, can tell you that there is life “after WG” as well.  Hang in there through getting the disease under control, but know that eventually there will be better days!  And hang onto your dream (maybe with a few adjustments), or be open to a new one that excites you now, but believe in something that helps you get through each day. 

I hope every Wegener’s patient will see how something good can come of the “quiet time” of reflection during recovery, maybe even learning something special about a family member, friend or caretaker that might never have happened under different circumstances. 

From the vantage point of my age, I can look back and see many things differently now, that I had thought to be disasters when they happened.  Isn’t life a great school for learning, when anything can be a blessing if we choose to look at it a new way?  Every change brings a new look if we choose to see it differently.  That must be why it is said that life is change, and when change stops we are no longer living. 

When things look the blackest, change can only bring light.  That light may illuminate the spark of a dream thought lost.  I hope every WG patient will see something good come from what may now seem otherwise.  It may even be your dream coming to life – grab it and hold on for the ride!   To quote a TV ad line: You’ve got a lot of living to do!

WG or VF, what's in a name? Gary S. Hoffman, M.D.

Gary S. Hoffman, M.D.

Harold C. Schott Chair of Rheumatic & Immunologic Diseases

Center for Vasculitis Care and Research

Cleveland Clinic

Cleveland, Ohio                              

January 2006

            2005 has been a critical and interesting year for our organization. Most of our members have supported the name change from the Wegener’s Granulomatosis Association (WGA) to the Vasculitis Foundation (VF). Others have felt a trust had been betrayed. Explanations were offered to try to convey the scientific and organizational logic for the change. Still, unfortunately, not everyone has "gotten it". In this article, we will try to make the reasons for change as clear as possible and hope that all of our readers will become better informed and most importantly satisfied that this is not only the right thing to do, but also the only logical course to follow.

            Almost all forms of vasculitis (inflammation of blood vessels) remain unsolved mysteries. The few for which causes are known include those in which infectious agents incite inflammation in the vessel wall. Others may be triggered by medication reactions. Rarely cancer cells directly invade the vessel and may cause vasculitis. These are a minority of all cases. Most forms of vasculitis present questions to doctors and researchers that are the same regardless of what form the disease takes or what unique name we give it. Examples of such questions are-

1. What has changed within the vessel or affected tissue that has caused white blood cells to be lured to it and incite injury?
2. Because white blood cells do not attack every vessel or every tissue, are there factors that protect some organs and not others?
3. What abnormalities might be present in immune cells that led them to be misdirected from their mission of protecting you to now hurting you (autoimmunity)?
4. What instructions, within the cell’s blue prints (genes), have been turned on or off that cause it to behave badly?
5. What changes occur in immune cells and injured organs when certain treatments induce remission? What changes when relapses occur?
6. Why do some areas respond more rapidly and completely to treatment and others lag behind or fail to respond at all?
7. What blood tests can we use to detect a relapse before it occurs and then start treatment before damage can take place?

            If researchers were able to answer these questions for one form of vasculitis, there is no doubt that the answers would be relevant to all other forms. This, in part, explains why doctors and researchers devoted to making life better for patients with vasculitis do not just work on one single type of vasculitis. The answers may come from any type and then be applied to the others. One obvious example is seen in the very common therapies that are used for this whole category of illnesses. It is no surprise that consultants for the WGA, now the VF, have a long history of providing care and conducting research for not only WG, but also Takayasu’s arteritis, polymyalgia rheumatica (PMR), giant cell arteritis (GCA), Churg Strauss syndrome, polyarteritis nodosa, microscopic polyangiitis, central nervous system vasculitis, Behcet’s disease, Henoch Schonlein purpura (HSP) and Kawasaki disease and others. Currently established international vasculitis workshops bring experts together who study all forms of vasculitis because what is learned about one disease informs about others. A break-through in Behcet’s disease or GCA can become a break-through in WG, CSS, HSP, etc. Indeed the landmark work for the treatment of WG at the NIH in the 1970’s provided a roadmap for the treatment of ALL severe forms of vasculitis. Thus, just as doctors who are devoted to WG must also be well studied in other forms of vasculitis, the same should be said of the curious mind of affected patients and their families.

            These issues were among those addressed at the first formal retreat of the Board of the VF and its consultants on January 13 in Chicago. The commonalities shared by the vasculitides led to discussions of how we can do better for all patients with vasculitis. Agreement was reached in many areas, some of which you will find quite interesting. Let’s examine some lines of discussion from the meeting:

1. Doctors for people are not the only ones interested in vasculitis. So are veterinarians! Did you know that many different types of vasculitis have been found in animals? Mice, chickens, dogs, horses and even elephants, and that is only a small incomplete list. Many of these diseases have been found to have infectious causes and in most cases, occur in animals that have well understood immune abnormalities. We concluded that "Vets" should join in the problem-solving exercises to find causes and cures for vasculitis. This is not ongoing and should be.
2. Because certain forms of vasculitis are known to be due to infections and the majority of infectious agents in the universe cannot be identified in hospital laboratories, using routine tests, it was agreed that infectious disease specialists should help in finding the cause(s) of vasculitis.
3. Sometimes breakouts of vasculitis occur within common times and places, suggesting an infectious or other environmental cause. Epidemiologists are specifically trained to examine these events and trace illnesses to their root causes. They too should be part of the search to help patients with vasculitis.
4. Children suffer from many of the same diseases as adults, but we all know that they are also prone to illnesses that are not seen in adults. Conversely, adults may not be prone to certain childhood diseases. Examples include Kawasaki’s disease, a form of vasculitis that almost only occurs in children. Giant cell arteritis, on the other hand, never occurs in children and affects adults for whom the average age is 74. What factors establish vulnerability at different stages in one’s life? We agreed that Pediatricians need to play a greater role in this dialog.
5. So much of illness is genetically determined. This is not as obvious as one gene causing one disease, but instead is more likely to be complex sets of formulas in which the interplay of many genes may complete a pathway that leads to disease expression. It was agreed that geneticists need to become more involved in vasculitis research.

          How about health care services for patients with vasculitis? Are there delays in diagnoses? Do judgment errors occur in diagnosis and treatment? Are there adequately trained doctors with vasculitis experience in every city, region or state? The answers are obvious to every reader. There are inadequate services, expertise and delays and errors do occur. The solution? We need to train experts to be so numerous and well informed so that these problems are lessened and in time eliminated. The National Institutes of Health (NIH) provides some funds to train vasculitis experts, some individual universities/medical centers have designated modest parts of their budgets for vasculitis training --- but this is barely enough to provide for sorely needed services and researchers.

            The VF is committed to raising monies to help train vasculitis specialists.

            In Chicago, discussions with NIH administrators and the VF were also directed at joint sponsorship of retreats that would bring experts of every type together, devoted to vasculitis, to examine our knowledge base, treatment protocols, patient needs and research agendas, to ensure that the best strategies were in place to bring us closer to better treatments and ultimately cures for all forms of vasculitis.

            Does the notion of economy of scale apply to vasculitis? You bet! Can 12-13,000 American patients with WG influence government funding agencies and philanthropies to provide the 10s or 100s of millions of dollars necessary to solve the WG mystery? It has not happened so far. Is it more likely that such funding sources will respond to a lobby of 2 million vasculitis patients and their doctor advocates who appreciate the features common to these diseases, the burden of disease for patients, the resultant impact from disability, family dynamics and effects on national health care costs? It is really quite simple. All vasculitis patients need to band together, to advocate for each other, to petition for better care, more wide-spread training of doctors who should be able to recognize and treat their diseases in a timely fashion, using state of the art diagnostic tests and therapies, and funds for patient education and research. Who will lead this charge? It was agreed that the VF should be that organization. Changing the name from WGA to VF was not just a name change. It represents a new vision, and a new mission.

            During the next year the VF will be asking interested individuals, including members of disease-specific advocacy groups to consider applying for positions on the VF Board. To serve our patients best, we will try to identify roles for all who are willing to serve. Board members will be selected based on past experience, skills, intentions and as all of our 3rd grade teachers told us was so important, whether he or she "works and plays well with others." The consultant group will also expand to include people with many new skill sets, including veterinarians, specialists in pediatrics, infectious diseases, genetics and epidemiology…. and whoever we need to get us to better therapies and cures!!!!

We know the VF will succeed. So many people have devoted so much, for so long, and asked for nothing other than a better life for our patients. Failure is not an option.