Identification of Novel Wegener’s Granulomatosis Susceptibility Genes

Current research study for the Vasculitis Foundation

Investigator: Katherine A. Siminovitch, M.D.

Location: Mount Sinai Hospital, Toronto, Ontario, Canada

Timeline: March 1, 2004 – ongoing

Abstract
Wegener’s granulomatosis (WG) is a multisystem, necrotizing, granulomatous vasculitis that affects about 3 in every 100,000 people in the United States and is equally prevalent in males and females. Diagnosis of WG is difficult, and many physicians are unfamiliar with the condition. Thus, there is a significant unmet medical need for improved diagnostic tests. Development of new diagnostic and therapeutic approaches to WG has been substantially impeded by lack of understanding of the causes of WG.


What I have to say: I am really pleased with this study because I think it is helping doctors diagnose Wegener's Granulomatosis. Without a good diagnostic test, patients can die with the disease. It is now known that this disease must be treated so that the patient can have a limited normal life. More people are getting diagnosed earlier and some of these people are living better lives than eight years ago when I was diagnosed.

Wegeners---A few facts

This video was put together and edited by a Wegener's Granulomatosis patient. We really need the help in finding a cure for all Vasculitis diseases.

Dr. Oz has good info

Whenever I get the time, I click on the TV to watch Dr. Oz show, which is about 3 p.m. PST for some good info on keeping healthy. As you probably know from looking through this blog, staying healthy is very important when you have a chronic illness. Supplements are a must. In my case I take extra Vitamin C, B-complex, E, and others on recommendation from my immunologist and other doctors.

Omega-3 has been very important for my vascular health (Wegener's Granulomatosis is a vasculitis disease) and inflammatory response. I take it every day.

What was surprising to me was what I heard on the Dr. Oz show this week (I think it was this week -please forgive me, but my meds do make it hard for me when it comes to time in the past.)

The surprising news was that Vitamin C is lacking in our diets and that it is very good for women to take 1000 mg of this vitamin a day. It helps to prevent urinary tract infections. I don't know about you, but I have done all the recommended things from my doctors since I was in my 20s and it didn't help much. I even take a cranberry pill a day to keep my urinary tract healthy. Plus infections are not good when you have a chronic illness. So how exciting. I take Vitamin C almost daily to keep healthy. And now there is proof that many women need it too.

Good job Dr. Oz.

Another Day Without Water

For some reason our building needed some work done on the plumbing. At least our landlady sent a note that we would be without water for the entire day. I think it was a fluke, but we were without water most of the last evening too.

I am trying not to complain. I am pointing out how just losing one utility can ruin the whole day. Instead of whining too much, I took a vacation day by doing a little shopping and now I am in Starbucks listening to some really good Indie Music plus drinking a tall vanilla latte.

So the day is not a wash, thankfully. Plus I am getting some writing in. Thanks everyone for looking at and buying my ebook "In the Shadow of Death: Reflections on a Chronic Illness." Don't forget I also have a poetry ebook that contains good pictures and poems about how I feel about the illness. As for how I feel other than needing a nap in the afternoon, I am doing pretty well.

Vasculitis Month - ebook

So I put together a collection of reflections, etc. for my Wegener's Granulomatosis remember us month (also you can remember breast cancer too if you want) and the ebook turned out to be over 11,000 words give or take cause it includes the copyright page information.

The photo was taken the first year of this disease and I had been on high dosages of prednisone for almost six months. I have all the signs of high prednisone useage. My kidneys were not working too well yet. Don't believe the Madonna smile because I could feel myself drowning. My brain hadn't worked for several weeks or more by then.

Anyway, In the Shadow of Death: Reflections on a Chronic Illness can be found at Smashwords and Amazon Kindle. It contains my Vasculitis story, my experiences with medications and doctors, plus a lot of opinions from a really sick patient.

More importantly, I want to let other patients know that Vasculitis is not the end of life. I have had eight and a half years of Wegener's Granulomatosis. It has been the secondary problems like kidney failure and the medications that have made me slower than I was before the disease. But, I still think, write, and love.

Cholesterol

Once again I have had the cholesterol test. The last one was in 2007 and it is pretty much the same numbers with an HDL/LDL ratio that makes my doctors nervous. They want me to go on some type of cholesterol drug. I have already tried statins a few years back and it caused some nausea, vomiting, and liver proteins.

I don't need that again. But my doctors both agree that the ratio (about 5.3) is genetic, and pretty high. My cholesterol numbers are high normal. My one doctor suggested that I try Nicacin or a binder. I am not to excited about using a binder because once again I can feel the stomach cramps start right now. Maybe it is just my imagination.

The nicacin might be an acceptable substitute except that when mixed with two of my high blood pressure meds, it does cause a drop in blood pressure. I will do a think and then I will talk to my primary care physician. He didn't talk about Niacin the last time, but we might have the conversation. As for adding another med, I am not too excited about doing that.

I am pretty stable. My disease is stable. My kidneys are stable. I hate to kick over the traces. Not just yet.