Newsletter from Vasculitis Foundation for Nov/Dec 2011

[drz]

Just finished reading the latest newsletter. Lot of good stuff in there. Many of the topics we have discussed here on the forum but it is nice to see the experts generally agree with our collective wisdom. There are new webinar and podcsts available, one on vasculitis and and one on immunizations.

The article on five tools to cope with invisible illness starts out "You look so good! You can't be as bad as you say...we can resonate to those remarks, right.

Several articles about individuals affected who did various fund raisers for Vasculitis and to raise awareness.

GPA seems to have one of the highest relapse rates (50-80%) of the autoimmune diseases. Only the arteritises rank that high or higher.

Collectively the 100 plus AI diseases are one of the biggest health care expenditures (estimated 100 billion) right up there with the big boys that everyone recognizes. The recent increase in AI diseases is startling and puzzling. VF estimates 50 million Americans currently have an AI disease. Many diseases have increased 3 or 4 times in past decade or two, probably due to environmental factors that are unknown or unrecognized but causing much concern due to increasing costs for health care. In USA over half of the people do not get care recommended due to high cost of care.

The VF consultants recommend 1000-1200 mg calcium and 800 IU vitamin D daily. Even low doses of pred are considered a risk factor for bone fractures.

There were many other questions they answered which we have also discussed on the forum.

Average length of time with symptoms to diagnosis is four years.

Is any one here chairing one of support groups that meet in some locales.

The VF foundation in KC states it has members in Canada and UK but there is also a VF Canada organization. Any Canadians involved with that?

There is a Reproductive Health in Men and Women with Vasculitis Study in process. Any one here participating since this issue has been discussed recently. How about the Abatacept trials for treating mild relapsing GPA. Wish I qualified for that one.

[Al]

Looks like a great issue, but I only found the March/April issue online. How and where...?

Al

[mama2005]

I got my news letter today can't wait to read it tomorrow it was a long day at cc so I need a medical break. Al I get one sent every month or so I joined the vasculitis foundation and they send it to me.

[Kami]

Hi drz,

I take two extra strength (750) Tums everyday for Calcuim, and one 50,000 Vitamin D monthly.

My daughter and I will be co-chairs of the East Central MN group starting in January. We are very excited about it.

Can't wait to get mine, may be in the mail when I get home? Looks like some good stuff this month. I just became a member so this will be my first offical newsletter. Thanks, now I can't wait to get home and look for it!! :)

[Sangye]

Kami, Tums is a very poor source of calcium. And taking one big hit of vitamin D a month is not good. That's not at all how the body normally assimilates vitamins. Please check with a holistic doctor for better options!

[Psyborg]

After I had bariatric surgery I was instructed to take daily calcium + d and a multivitamin. Calcium in tums is, I believe, calcium carbonate. Calcium carbonate is not absorbed as well as calcium citrate.

A good source for vitamins and calcium are bariatric supplements. Due to the decreased digestive track we require pretty good and easily absorbed vitamins and calcium chewables. Anyway just another alternative for people.

[Kami]

Kami, Tums is a very poor source of calcium. And taking one big hit of vitamin D a month is not good. That's not at all how the body normally assimilates vitamins. Please check with a holistic doctor for better options!

Thanks Sangye, I will do! I did have an infusion of something for my bones back in February of 2010, I can't remember the name of it I will have to look back. I currently take a multi-vitamin and 1000mg of B12 too as I have pernicious anemia as well.

[drz]

I was told to take both, but to take tums with meals since i guess it helps some with the GERD but calcium citrate is easier to absorb the pharmacist said.


After I had bariatric surgery I was instructed to take daily calcium + d and a multivitamin. Calcium in tums is, I believe, calcium carbonate. Calcium carbonate is not absorbed as well as calcium citrate.

A good source for vitamins and calcium are bariatric supplements. Due to the decreased digestive track we require pretty good and easily absorbed vitamins and calcium chewables. Anyway just another alternative for people.

[jola57]

Drz, Canada has a vasculitis foundation as well and they seem to have an annual get together, but it is a far cry from the way American VF works. We trully are the poor cousins in everything

[Al]

Drz, Canada has a vasculitis foundation as well and they seem to have an annual get together, but it is a far cry from the way American VF works. We trully are the poor cousins in everything

Not so sure about that, Jolanta. There are weak points in US Medical services as well. Along these lines, I don't think it is breaking the forum/s proscription on politics to merely observe that the political climates in the two countries are different.

Al

[Sangye]

Drz, Canada has a vasculitis foundation as well and they seem to have an annual get together, but it is a far cry from the way American VF works. We trully are the poor cousins in everything
Ha! No way. You have universal health care, for one.

A friend told me this weekend that he visited Canada recently and marveled at how clean it is. He said the US looked filthy in comparison. So you're the clean cousins! LOL

[drz]

How many readers get this newsletter?

Welcome to VF E-News, which provides information on upcoming VF events, patient resources, and links to our new educational videos and patient interviews.


In this issue of VF E-News:
Nominate a medical professional for the 2016 V-Red Award
Learn why vasculitis is frequently is undiagnosed in early stages
Participate in patient-centered research online
Register for upcoming webinars in 2016
Watch the 2015 VF Road Map to Wellness Webinars
Join the Vasculitis Foundation
If you would like to receive our bimonthly VF newsletter (in print or electronic format) please join the Vasculitis Foundation today.

[drz]

They have lot of good webinars listed:

Webinar: Coping with Vasculitis
shehzad-niazi-15816982Coping with Vasculitis
Tuesday, January
12:00 p.m. (Eastern)
Speaker: Dr. Shehzad Niazi, Mayo Clinic – Jacksonville


Click HERE to watch the webinar





We all know that a vasculitis diagnosis is stressful but, there are ways to manage stress and cope with your illness. Dr. Niazi discussed the role of stress and how it can impact your life with vasculitis. He offered ideas and strategies to help you develop effective coping skills that can aid in maintaining a good quality of life. In addition he talked about developing practices of mindfulness and resilience that can help you in your journey with vasculitis.


Dr. Niazi is a consultant at Mayo Clinic Jacksonville and works with the Cancer and Transplant Centers. He is board certified by the American Board of Psychiatry and Neurology in Psychiatry and in Psychosomatic Medicine. He has completed the Specialty Certificate in Psychiatry from Royal College of Physicians and surgeons of Canada and is a Fellow of the Royal College of Physicians and Surgeons of Canada and is a Distinguished Fellow of American Psychiatric Association. Dr. Niazi presented at the 2015 International Vasculitis Symposium in Jacksonville, Florida in June 2015.


Webinar: The Anatomy of Illness and New Perspectives
Webinar: The Genetics of Vasculitis and Current Research
Webinar: Vasculitis, Fertility, and Pregnancy: How to build a family despite having vasculitis!
Webinar: Back To School with Vasculitis: Managing your drugs, treatments, social life, doctors’ appointments and classes!
Webinar: Long-term Issues in ANCA-associated Vasculitis: What’s Beyond Year One?
Webinar: Living Well With Vasculitis
Webinar: Eye Involvement in Vasculitis
Webinar: Steroids: A User’s Guide
Webinar: Patient Empowerment: Become an empowered patient who can make a difference in vasculitis research!
Webinar: Road Map to Wellness: How Do We Get There?
Webinar: The Road Map to Wellness Webinar for Caregivers
Webinar: Introducing the New Vasculitis Program at the National Institutes of Health
Webinar: Medications: The Good, the Bad, the Ugly
Webinar: The Science of Vasculitis Research
Webinar: Creating Effective Communication Between Patients and Physicians
Webinar: The Road Map to Wellness (2014 – webinar #1)



Webinar: The Anatomy of Illness and New Perspectives
The Anatomy of Illness and New Perspectives Tuesday, December 15, 2015 1:00 p.m. (Eastern) Speaker: Gary S. Hoffman, M.D., M.S., MACR, Center for Vasculitis Care and Research Dr. Hoffman will present the final educational webinar of 2015. During his presentation, Dr. Hoffman will address some of the important questions that patients ask: How did I get vasculitis? Why me? What is the cause of vasculitis? What do I have to do for a cure? He will explore the makeup of diseases and some of the new ideas on the cutting edge of research, including the role of the immune system, genetics, infectious diseases, mechanisms and patterns of disease. Dr. Hoffman will also discuss the role of microbiomes and how they interact with genetics, gender, age and immune status to produce disease. As we learn more, will treatments that modify microbiomes control/cure the disease? Dr. Hoffman joined the Cleveland Clinic in 1992 and is the founder of the Cleveland Clinic Center for Vasculitis Care and Research. Dr. Hoffman led investigations of new therapies for vasculitis and coordinated the first international multi-center studies of diagnostic laboratory and imaging tools to assess vasculitis disease activity. These multi-center studies proved that research involving large cohorts of patients could be done successfully by collaborating with other vasculitis researchers around the world. In January 2015, Dr. Hoffman retired from patient care to focus on research.

[debra]

Drz, wow, that's great... Drz, have you veiwed the ones on you tube, seminars I mean? I watched a couple years back, and specialists all did a presentation on wegeners... It was hours long if I recall correctly... Thanks again, Drz... Get rest Drz, you just had surgery... Deb...

[blu4runner]

I am a member of the vasculitis foundation and I get the newsletter as well. There are many great webinars and videos that are a helpful resource

[debra]

Pete, hello there... Hey, Pete, have you looked at the you tube ones? I would imagine these are the same? I watched a couple back in I think 2012, that were hours long, and the specialists were all there. I think Merkel was there, as he was I'm pretty sure still in Boston then... Power point presentations, ect... You tube is pretty cool for this stuff... The mark Lesko story was a pretty touching video... Pretty cool... Deb...

[Pete]

I've watched a few of the webinars live. I also got to hear Dr Hoffman's talk when he spoke to our local VF chapter last fall. Lots of good stuff going on. Hope the research labs out -- soon.

[debra]

Pete, very cool... Ya, I also hope the research pans out soon... For now, I'd settle for removing the RARE!!! This would be a start... Here's hoping... Deb...