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Thread: Looking for other people who have WG and are from Mercer County, N.J..

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    Default Looking for other people who have WG and are from Mercer County, N.J..

    Hi, I am looking for other people in Mercer County, N.J. who have contracted Wegener's and live in my area. My goal is to research why we get this in the first place? Ther is so little info available on this subject. Thanks, Bob W.

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    Hi Bob,

    Here are a couple of resources to address your concerns:

    There is a map of forum member locations at this link: https://maps.google.com/ Just hover your cursor over the pin to see the member's handle. You may also want to insert your location. The color is your choice. Just don't use a candle as those indicate forum members who have lost their battle with this dumb disease.

    There is more research on our disease than you might think. Go to Research to get started. At the moment, there is no consensus on the cause of vasculitis (Wegener's/GPA is one of several forms of it). There is much research going on regarding treatments. You can go to the thread "Don't stop researching" on this forum to see what other members are reading.

    When you get a few minutes and feel like sharing, go to the New Members Introduction thread and introduce yourself more fully to the group. There's someone on here 24/7/365 who can share experiences, suggest treatments (with your doc's approval), or just let you vent. This is a great resource.

    Good luck and better health!!
    Last edited by Pete; 05-03-2015 at 12:34 AM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    dear friends, I looked at the big map , so crowded in my area I couldn't get pin in. My interest is somewhat different, I want to stop other people from getting what I did. The world map seems crowded with cases on the US East coast, and England of all places. I'm curious why the high concentration in certain areas; is it reporting or is something unique happening in certain areas. A survey on cases in a select area
    might help solve some questions and be worthwhile. Who wants to help? Bob W.

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    I lived in union county for 25 years. I remember when I took my mom to the hospital when she had cancer and the dr asked me if she ever lived out of the country as we lived in 'cancer alley' I.e. Turnpike area with all the industry. I've lived out of nj for 29 yrs now and been diagnosed with WG for 2 years now but had symptoms for most of my life.
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

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    Quote Originally Posted by bob7282000 View Post
    dear friends, I looked at the big map , so crowded in my area I couldn't get pin in. My interest is somewhat different, I want to stop other people from getting what I did. The world map seems crowded with cases on the US East coast, and England of all places. I'm curious why the high concentration in certain areas; is it reporting or is something unique happening in certain areas. A survey on cases in a select area
    might help solve some questions and be worthwhile. Who wants to help? Bob W.
    I think one big reason WG is so much more concentrated on the east coast than in western areas, according to the map, is that the population is so much more dense in the east. We will find it more concentrated around big cities in the west for the same reason. But that doesn't discount your idea of finding specific triggers in specific areas. Sometimes we hear of pockets high disease occurrence even in low population areas. These include certain mining areas, near glass factories or toxic waste dumps, etc. Many likely triggers (not direct causes, but things that elicit the reaction in the immune system) , have been identified. Discussions of genetic predispositions, including research, have also come up. You may find a lot in the archives of this forum, under the Search button, using various keywords. Though it may be time consuming to wade through the many threads and posts to find very specific info, it may be worth it in the long run. And just continuing to connect with the forum on a daily basis, these subjects are bound to come up, complete with links to research studies.
    Anne, dx'ed April 2011

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    Default More details; the point is more cases in one area than probable. Why? Bobw.

    ;I feel that that more cases of WG in my area indicates a possible problem in this area; regardless of population. We're talking about a 30'000 to 1 ratio. The difference also lies in it's cause not really being known; as opposed to living near a waste dump, and also there's no comparison data available in similar areas. I was never asked to complete a survey or any really specific questions about any exposures. Why can't patients do their own research?
    Some data might be useful if specific occurences are found. BobW.

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    Quote Originally Posted by bob7282000 View Post
    Hi, I am looking for other people in Mercer County, N.J. who have contracted Wegener's and live in my area. My goal is to research why we get this in the first place? Ther is so little info available on this subject. Thanks, Bob W.
    Some reading for you: only thing I do not like is the use of the word "Wegner's" ... it's GPA ... I just feels those still referring to it as Wegs ...Wegner's etc ... are out of touch.

    What is Wegener's granulomatosis? What causes Wegener's granulomatosis?

    Wegener's granulomatosis, also known as Wegener granulomatosis is a type of inflammation and injury to blood vessels (vasculitis) that affects several organs, including the lungs, kidneys and upper respiratory tract. It is a life-threatening disorder that requires long-term immunosuppression. Some patients die due to toxicity of treatment.

    Wegener's granulomatosis is a rare disorder which restricts the blood flow to several organs. According to the Vasculitis Foundation, Kansas City, USA, it affects about 1 in 20,000 to 1 in 30,000 people. Although individuals of any age may be affected, initial symptoms and diagnosis usually occurs in patients in their 40s and 50s. Males and females are equally affected. Caucasians seem to be significantly more commonly affected than other ethnic groups.

    As well as causing inflammation to the blood vessels, Wegener's granulomatosis produces granuloma around the blood vessels. A granuloma is one of several forms of localized nodular inflammation found in tissues - put simply; a granuloma is a type of inflammatory tissue.

    Experts do not know what causes Wegener's granulomatosis. We do know it is not a type of cancer or infection.

    If treated and diagnosed early enough, a patient with Wegener's granulomatosis can make a full recovery. If left untreated there is a risk of kidney failure and death.

    Wegener's granulomatosis is part of a larger group of vasculitic syndromes. All of which feature an autoimmune attack by an abnormal type of circulating antibody called antineutrophil cytoplasmic antibodies (ANCAs) against small and medium-sized blood vessels. Examples of vasculitic syndromes include:
    • Wegener's granulomatosis
    • Churg-Strauss syndrome
    • Microscopic polyangiitis

    Wegener's granulomatosis is formally classified as one of the small blood vessel vasculitides in the Chapel Hill system, even though it affects both small and medium-sized vessels. What are the signs and symptoms of Wegener's granulomatosis?

    A symptom is something the patient senses and describes, while a sign is something other people, such as the doctor notice. For example, drowsiness may be a symptom while dilated pupils may be a sign.

    Wegener's granulomatosis signs and symptoms can develop either gradually or suddenly. Initial symptoms can vary widely, and diagnosis may sometimes be delayed because of their non-specific nature. The first symptom in most patients is rhinitis - runny and stuffy nose. Signs and symptoms may include:
    • Persistent runny nose
    • Cough - sometimes this may include blood
    • Ear infections
    • Joint aches
    • Loss of appetite
    • Malaise - a general feeling of being unwell
    • Nosebleeds
    • Shortness of breath
    • Sinusitis
    • Skin sores
    • Swelling of joints - often initially diagnosed as rheumatoid arthritis; but is usually arthritis
    • Eye pain
    • Burning sensation in the eyes
    • Eye redness
    • Vision problems
    • Fever
    • Weakness, which is often due to anemia
    • Rapidly progressive glomerulonephritis - a syndrome of the kidney that, if left untreated, rapidly progresses into acute renal (kidney) failure.

    What are the causes of Wegener's granulomatosis?



    Many scientists tend to believe that an initial infection may be the start of the whole event. Studies have shown that about 50% of patients with Wegener's granulomatosis had an infection. Some people believe that there may be other contributory factors, such as:




    • Environmental toxins
    • A genetic predisposition
    • A combination of both

    How is Wegener's granulomatosis diagnosed?

    A doctor will usually only suspect Wegener's granulomatosis when the patient has had unexplained symptoms for an extended period. The doctor, initially usually a GP (general practitioner, primary care physician) will ask the patient about the signs and symptoms, as well as conducting a physical exam and studying his/her medical history.

    The following diagnostic tests may be ordered:
    • Blood tests - may detect ANCAs (anti-neutrophil cytoplasmic autoantibodies), antibodies which are present in 80% to 95% of patients with active Wegener's granulomatosis. ANCAs in blood cannot by themselves confirm a diagnosis of Wegener's granulomatosis, but they will provide helpful data towards one.

      A blood test can also measure the patient's sed rate (erythrocyte sedimentation rate). In this test, the speed at which red blood cells fall to the bottom of a tube is measured - this usually takes about an hour. A sed rate test can help determine whether there is inflammation in the body, and if so, how severe it is. When there is inflammation the red blood cells fall to the bottom faster.

      A blood test may also check for anemia, a common problem among patients with Wegener's granulomatosis.

      A blood test may also show whether the kidneys are working properly.
    • Urine test - usually done to determine whether the kidneys have been affected.
    • Chest X-ray - this imaging test can sometimes help the doctor decide whether the patient has Wegener's granulomatosis or some other lung disease.
    • Biopsy - a small piece of tissue is removed from an affected organ and examined under a microscope. This is the only way of being 100% certain whether the patient has the disease. Tissue samples might be taken from the airways, nasal passages or lungs to rule out or confirm the presence of granulomas and vasculitis. Sample may also be taken from the skin or kidneys if the patient has renal (kidney) failure or cutaneous vasculitis.

    What are the treatment options for Wegener's granulomatosis?

    Wegener's granulomatosis treatment is usually divided into two stages:
    • The induction of disease remission - getting rid of all the signs and symptoms
    • Maintenance of disease remission - preventing a recurrence

    If Wegener's granulomatosis is diagnosed and treated early on there is a good chance the patient can make a full recovery within months. Some patients may require longer. It is important to monitor the individual after signs and symptoms have gone away (remission) because the disease can recur.

    Before the availability of steroid treatment, 90% of patients died within one year, with average survival being 5 months. Steroids increased average survival to 8 months. Cyclophosphamide (CYC), which became available in the 1970s, was a major breakthrough, after which five-year survival has reached 87%.

    Medications:
    • Corticosteroids - such as prednisone may be prescribed for initial signs and symptoms. In a few cases this is the only medication needed.
    • Other immunosuppressive drugs - such as cyclophosphamide (Cytoxan), azathioprine (Imuran) or methotrexate (Rheumatrex) is prescribed as well in most cases. The aim is to stop the body's immune system from overreacting.
    • Rituximab (Rituxan) - this medication, which was originally designed to treat non-Hodgkin's lymphoma (a type of cancer), was later approved for rheumatoid arthritis treatment. Rituximab reduces the number of B cells in the body - B cells are involved with inflammation. If standard treatments are not effective some doctors may prescribe Rituximab.

    As many drugs used for Wegener's granulomatosis treatment weaken the patient's immune system, it is important to monitor his/her condition - a lower immune system is less able to fight off infection. The following medications may be prescribed:
    • Trimethoprim-sulfamethoxazole (Bactrim, Septra) - help protect from lung infections
    • Bisphosphonates (Fosamax) to prevent osteoporosis. Corticosteroids can cause bone loss (osteoporosis).
    • Folic acid - to prevent sores and other problems that can occur when folate levels are low. Methotrexate can deplete folate levels.

    Surgery - if the Wegener's granulomatosis patient has suffered kidney failure the doctor may recommend a kidney transplant. What are the possible complications of Wegener's granulomatosis?

    Complications usually result from lack of treatment.

    Deafness - granulated tissue in the middle ear can become inflamed, leading to deafness.

    Skin scarring - sores can develop on the skin, which may result in severe scarring.

    Heart attack - if the arteries of the heart are affected.

    Renal (kidney) damage - the disease, if left untreated, will usually eventually affect the kidneys. Glomerulonephritis may develop, in which the kidneys cannot filter out waste and excess fluids from the body properly, resulting in an accumulation of waste products in the bloodstream. Most patients who die from Wegener's granulomatosis do so as a result of kidney failure.

    Written by Christian Nordqvist


    Link: What is Wegener's granulomatosis? What causes Wegener's granulomatosis? - Medical News Today

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    Quote Originally Posted by bob7282000 View Post
    ;I feel that that more cases of WG in my area indicates a possible problem in this area; regardless of population. We're talking about a 30'000 to 1 ratio. The difference also lies in it's cause not really being known; as opposed to living near a waste dump, and also there's no comparison data available in similar areas. I was never asked to complete a survey or any really specific questions about any exposures. Why can't patients do their own research?
    Some data might be useful if specific occurences are found. BobW.
    1 case in 30,000 is the statistic I've heard most often in regard to WG, across the board, regardless of population density or demographics. Yes, there could be something in your immediate area, as in a number of other specific areas, which could make the ratio higher than that. The latest we hear is that a number of possible triggers have been identified, whether environmental, or medical, such as infections. Studies have also implicated genetic predispositions, not meaning direct inheritance. I would think in a higher population area it would be a lot easier to find the patients and compile the evidence. Research studies can be found on the internet from some of the best known WG experts, most of whom practice in denser population areas.

    Yes, we can do our own research. We may feel we sort of have to, since many of us don't get a lot of info from our docs. If you could contact enough patients in your immediate area, you could survey them on their lifestyles, employment, and exposures. It would probably not be considered a scientific study but it could be interesting and helpful. Maybe if you found some trends you could get the attention of some medical researchers. I was never asked about exposures and such, either, except by a doc who wasn't my own doc. And I don't remember hearing of most other people's docs on here asking them much of anything either. Some forum members do have excellent docs who share a lot of information with them, and probably would ask these things, and we learn a lot from each other. Results from searching the archives may be sort of all over the place, but with persistence, a lot of info can be found there on what people think causes WG.
    Anne, dx'ed April 2011

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    Hi Bob,

    I came across this article about the Epidemiology of Vasculitis and thought it might be interesting for your research. It's about descent rather than geographical area in which you live, but I thought it might be of interest. I copied/pasted below the part about GPA/ANCA-Associated Vasculitis:

    http://www.indianjrheumatol.com/arti...ltext#sec2.3.1

    2.3.1. ANCA vasculitis

    The ANCA vasculitides (granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA) and eosinophilic granulomatosis with polyangiitis (EGPA)) (AAV) are all recognized in the Indian subcontinent. In Europe the overall incidence is around 20/million.2 In Europe there appears to be a North–South gradient in incidence, with MPA being more common in Southern Europe (Lugo, Spain latitude 43°N) compared with Tromsų in Northern Norway (latitude 70°N),27whereas GPA is more common than MPA in Northern Europe. Care was taken in this study to minimize variations in classification. The period prevalence in New Zealand in 2000–2003, which has a similar latitude south (40–44°S) to Paris in the north (49°N), is 58/million and appears to be similar to that observed in Paris.19, 28 In European studies EGPA is the least common form of AAV.
    The incidence rates of AAV are similar in most Caucasian populations, the populations studied in the Western USA, Australia and New Zealand are predominately white Caucasian populations of North European descent. Recent studies in non-white Caucasian populations suggest a lower incidence. A prevalence study from France suggests that GPA is less common in people of non-European ancestry than MPA (Mahr et al 2004). In New Zealand GPA is twice as common in Europeans than Maoris or Asians.29 In Japan GPA is also much less common than MPA,30 and cANCA-associated disease is less frequent than pANCA-associated disease.30 Large case series from China suggest that MPA is more common than GPA.31 In a multi ethnic series from Chapel Hill in the USA, GPA is relatively uncommon in African Americans.32
    Two geographical regions with an apparently high incidence of MPA are Japan and Kuwait. In the Kuwaiti national population, the incidence of MPA was 24/million.33 In Japan, the incidence of MPA was 18.2/million, higher than any European figure.30
    In European Caucasian populations there is a close relationship between GPA and ANCA type, GPA being closely associated with PR3-ANCA. MPO-ANCA is more closely associated with MPA. In Japan and China this relationship is not so clear cut and there seem to be relatively more patients with GPA who are MPO-ANCA positive.
    Recent genome wide association studies suggest that GPA is associated with the HLA-DPB1*0401 allele, the PI*Z allele ofSERPINA1 and the PRTN3 gene.34 Serpina 1 encodes the alpha 1 antitrypsin gene and PRTN 3 encodes proteinase 3. Overall GPA incidence is associated with HLA-DPB1*0401 allele frequency but not with PI*Z allele, or latitude.35 Variation in HLA-DPB1*0401 population allele frequencies may explain variations in GPA incidence. HLA-DPB1*0401 has a similar frequency in India to Europe. The PI*Z allele of alpha 1 antitrypsin is relatively uncommon in India compared with northern Europe.36 Thus it might be expected that GPA might occur in India with a similar frequency to Europe.

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