Vasculitis Foundation Video Project

Will you tell me your story?

The Vasculitis Foundation is preparing a special video for the symposium in Chicago, featuring stories by patients just like you. This is at the international level of awareness.

See the Vasculitis Awareness Channel on YouTube:
http://www.youtube.com/user/vasculitisawareness

We need YOUR help. Check out the Video Project Guidelines in the links on the YouTube Channel.

You are encouraged to prepare a 2-4 minute version of your story, and share that with the Vasculitis Foundation. These stories about real people with vasculitis will put human faces on this condition and increase public awareness.

Increased public awareness helps you too, because when more people become aware of this condition, then  we expect more people will contribute to the cause. Either as volunteers or as financial contributors to research. We will eventually use this body of patient stories to help support grant requests to federal research programs and to major pharmaceutical companies, who provide funding for research into better treatments and an eventual cure.

It all starts with you. All ages welcome, all diagnoses of vasculitis should be represented, plus family and caregivers too! Don't be shy. Check out the YouTube Channel, and you will see other people telling their stories soon. We are in this together.

Now, to make this easier for you. I can help those of you who live in New Mexico.

I have access to the equipment, and will by appointment, meet you anyplace that is convenient for both of us to record your story. I will even travel to meet you in your home town if you are willing to meet with me. We can record your story as many times as it takes for you to feel comfortable with the results.

I cannot emphasize enough how dramatic the results of this video project could be, both to you, and to other patients who may see your story and know they are not alone.

For more information, check out the Vasculitis Awareness Channel on YouTube, and review the Vasculitis Foundation Video Project Guidelines.

If you are able and willing to record your own video, perhaps with the help of a family member, then please let me know you plan to create a video. You can also contact me if you want my help recording your story.

Don't want to do a video? 
Then send me a nice photograph of yourself and a typed version of your story. I would like to know your stories anyway, and I can make sure it gets where it needs to go. We cannot publish all of the videos anyway, but there is a page on the Vasculitis Foundation website where your story can be presented. See this page for examples: http://www.vasculitisfoundation.org/patientstories


Thank you for your consideration.


Joseph Carpenter
Chapter Leader
Vasculitis Foundation in New Mexico

Vasculitis Foundation YouTube page updated

Hello Everybody,

We recently finished uploading DVD content from both the 2008 and 2010 symposiums. These videos include the full content from both DVD sets. You are welcome to view them online, and if you would like to purchase a set of DVDs to watch at home, there is a link to the Vasculitis Foundation order page on the YouTube channel.

We hope you all get a tremendous take away benefit from these instructional sessions, and then look forward to attending symposiums in Chicago and Atlanta in 2012, where the most recent developments in vasculitis treatment will be presented.

I was very happy to be involved in the effort to put these educational materials online. You can view the results of those efforts at the link below, and perhaps I will provide a means for show and tell at a future chapter meeting.

http://www.youtube.com/user/vasculitisfoundation/featured

www.youtube.com

November Meeting Wrap-Up

Vasculitis Foundation in New Mexico
Albuquerque Chapter Meeting
November 18, 2010
Deli-Berry Restaurant

Present:
Joseph C. (CSS family)
Meaghan C. (CSS patient)
Dennis W. (WG patient)
Rupal P. (Family - WG suspected, mother still undiagnosed)
William C. (CSS family by telepresence in Skype)

We met at Deli-Berry. When I arrived, Dennis and Rupal had already introduced themselves and were busily sharing information. Rupal mother is still undiagnosed with a pending Wegeners diagnosis.

I initialized Skype and called William, who had indicated an interest in joining this months meeting. He remained connected throughout the meeting and as the only remote participant, he was able to use video and text chat. With multiple recipients, only voice connections are possible.

Most of the meeting was spent sharing links to sites that are already available on the Education page of www.nmvasculitis.org. We discussed the usefulness of www.uptodate.com, for those who can get access. Recent changes to that site allow for temporary memberships, so it is now affordable to most anyone. Rupal has two family members who are physicians, so she sends them the links for which she wants full text, and they send her the information.

We all shared the names of a few doctors, and a huge oversight was corrected. We learned that NM Arthritis Associates has several rheumatologists on staff who are already familiar with vasculitis. Those names will be added to the list soon. William used to be a board member for the NM Arthritis Foundation, so he and I may have more to talk about in terms of learning from that experience to advance the efforts of this chapter.

You are all encouraged to share the names of your good doctors who know about vasculitis on the Vasculitis Doctors Form. When you do, those names are made available to benefit other patients. If you do, then others will be more likely to also share and you will likewise benefit. So, sharing information is in your best interest.

Joseph discussed that it would be nice if access to full text articles was a membership benefit for paid membership to the Vasculitis Foundation. Then also placing them in an corss-indexed structured, database, like a WIKI. Imagine being able to search through articles on any topic that interested you. Just an idea at this point but leveraging the army of members to find and submit links and articles, then having it peer reviewed to validate the information. What a lofty but also worthwhile goal.

We did Skype at the meeting between about 6PM and 8PM. One person Skyped in and was able to participate more or less fully with the meeting.

I will use that technology again at the next meeting. You may also can find me in Skype from time to time. I am more often online in Google, but have access with Google, AOL, Skype, Yahoo, and even ICQ.

There were five at the meeting, including one remotely. Which was awesome.

Our next chapter meeting may be online as well as at Deli-Berry

[To view this video, you have to look at this post online in a web browser. Email probably will not play the video. I have been told the microphone for this webcam (Logitech HD Pro Webcam C910) is very sensitive so if this sounds loud to you, feel free to use the volume control in the video player to adjust it according to your preferences. Also, this video is hosted in my SmugMug account, so if you have a video you would like to 'share with the class', please send it to me and I can host it for you privately.]

I am figuring out some new webcam technology, so I may either record some stuff at the meeting, and then later post it, or if I can get WiFi, the webcam, etc, all working, I may broadcast the meeting itself in Skype, Google Voice, or whatever works.

This technology exists, so it would be silly not to try and use it. At least that is how I see it.

This is great news for Bonnie in Taos, if she can tune in, and Jamie, who lives in Las Vegas, plus a few in Albuquerque who find it hard to come to the meetings in person, but might be able to participate remotely.

The next meeting is on Thursday, November 18th at 6PM. The location for Deli-Berry is 2520 Juan Tabo Blvd NE. On Juan Tabo, just north of Menaul Blvd NE, on the right hand side. You will see the Deli-Berry sign, and it is located in between a Sprint store and FedEx Office.

Most likely, I will try to braodcast the meeting in Skype, so to participate you will need a free account, and possibly a headset and/or a webcam. Once you have a Skype account, send me an Email with your Skype ID and I will send you my Skype ID in reply.

Here is some information about headsets and webcams, assuming you do not already have this equipment already installed on your computer.

If you have a newer MacBook, or pretty much any really new laptop, you may already have a webcam built in. In most cases, Skype will find it and use it automatically. But since I cannot possibly support all of the possible variables, you are going to have to sort that out. You may also find that an external webcam gives you better quality. The MacBooks are pretty good, but all others you will have to try them to find out.

Here is what I know...

For a headset only, you can do much worse than a Logitech ClearChat Comfort USB Headset (Black). Sample prices:

• $31.99 on Amazon.com
• $33.44 at Sears
• $37.88 at Walmart
• $39.99 at Target

There are other brands, like Plantronics for example, that are also dandy, but I am familiar with Logitech, so that is why I choose mention them. go to a store and compare for yourself. Try them on, and see what fits better for you.

USB connection gives you easy setup and great sound quality. Mostly, you just plug it in and it works. You may need to tell some software which microphone or headset to use, but it is pretty straighforward.

WHY NOT GO ALL THE WAY WITH A WEBCAM?

Or for practically the same money, you can go for the full boat with a web camera.

I am a big advocate for all vasculitis patients to get some kind of camera to record their stories as a way of spreading awareness. Just tell the camera the cleaned up version of what you tell your friends and family. It will go a long way towards making the public more willing to contribute time and money for this worthy cause.

But which camera?

I did a lot of research, and many cameras will work well. I personally like the Logitech cameras, because their is a nice A great compromise between quality and affordable price, plus I like how easy their software was to install.

Prices vary depending on how good you want the camera to be.

For most people I recommend the Logitech C310 HD Webcam. Again, good picture, good sound, and a good price. There are more expensive models, but this one will do the job quite nicely with very few compromises. Sample prices:

• $39.99 at BestBuy
• $41.99 at Amazon.com
• $49.99 at Office Depot
• $52.98 at Staples

Just as with the headsets, there are other brands that are also good, like Microsoft webcams are pretty good. I just choose to promote Logitech because I am familiar with them, they are easy to set up, and I like the software.

If you want to mimic my research, to see the quality differences, try starting with the webcam reviews at http://cowboyfrank.net/webcams/index.htm

He puts a number of different cameras through their paces. His most recent reviews are dated September 26, 2010, so they are not too old.

After doing the research, I like Logitech best. I chose that to give webcams to my family so we could all be on the same software as well. The Logitech Vid software is pretty nice and makes connecting a snap.

The webcam will work with any application that calls the camera and/or the microphone.

• Google Voice/Video Chat
• Skype
• Logitech Vid software (Free to download and can be used with any webcam.)
• Microsoft Live
• Yahoo Messenger
• etc, etc, etc, yadda yadda yadda

They all pretty much will work with most any USB webcam.

These better Logitech microphones, like on the C310, are noise cancelling, so you can use them to talk to people hands free instead of using a headset. You just turn down the volume enough to stop the feedback, then you can still hear the other party easily, and they can hear you too.

You can turn the camera part on and off as you choose. You get to turn that on and off in the software. Logitech software even has a feature to allow you to put a picture of your chooseing in place of a live camera feed. Handy for those days when you just don't want to be on camera, but still want to talk with people. Or when you want to turn the camera off for a few minutes to do something off camera, but still hear the other persons voice.

These are great tools for keeping people in touch, and at these prices, most people can afford them. In some ways, since the long distance over the Internet is free, you almost cannot afford not to take advantage of this technology to stay in touch with distant friends and relatives.

I am not trying to tell you what to do, but I will encourage you to share what you know.

Joseph Carpenter
Albuquerque Chapter Leader
Vasculitis Foundation in New Mexico

Hello from Long Beach!

At least two of us from New Mexico are here in Long Beach California to attend the 2010 All-Star Vasculitis Patient Symposium.

They say a picture is worth a thousand words, so I recorded a short intro video. If that works out, I may post more videos.



We will bring back some new information with us. You can expect to see that at future monthly meetings of the NM Chapter of the Vasculitis Foundation.

More later,

Joseph Carpenter

Mystery Diagnosis : Discovery Health

Mystery Diagnosis : Discovery Health



Posted using ShareThis

Every year, millions of Americans fall prey to real-life medical mysteries—ailments that go undiagnosed or misdiagnosed for years. Their lives are thrown into turmoil—sometimes their sanity is called into question—as medical professionals struggle to understand their baffling conditions.
Mystery Diagnosis tells their stories. In each episode we are confronted with two medical mysteries. The stories are told through intimate interviews with the patients themselves, their families, friends, and doctors. These interviews in combination with photos and home movies, highly stylized recreations and CGI anatomy sequences and take the viewer step-by-step through a medical odyssey. Symptoms emerge. Tests are analyzed. Specialists are consulted. But still, something is not quite right. Time passes and the daily struggle continues. And then one day, because of a patient's relentless pursuit of an accurate and final diagnosis (or the determined efforts of their family or a forward thinking doctor) the puzzle is solved and an accurate diagnosis given.
In each personal story, the patients, doctors and everyone involved discover the importance of being vigilant. They learn that medicine is often more of an art than a science, and that the journey to diagnosis can be a twisted path full of many surprises.

Tune in for all new episodes of Mystery Diagnosis! Get the schedule.

Reminder: Vasculitis Webinar TODAY! at 10:30AM for New Mexico listeners

SPECIAL ANNOUNCEMENT Join us for a Webinar on September 22 Subject: Vasculitis Defined Date: Monday, September 22 2008 Time: 10:30 AM (America/Denver, -0600 GMT) Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/355089098 The Vasculitis Foundation (VF) invites you to participate in the first-ever webinar on vasculitis. The 60-minute webinar will define vasculitis and discuss best treatment practices. There is no fee for this webinar. Vasculitis is a family of diseases, including Behcet's, Buerger's, Central nervous system, Churg Strauss, Cryoglobulinemia, Giant cell arteritis, Henoch-Schonlein purpura, Hypersensitivity vasculitis, Kawasaki, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid vasculitis, Takayasu's and Wegener's. The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis. The presenters for the webinar are: Dr. Carol Langford is the Director of the Cleveland Clinic Center for Vasculitis Care and Research. Dr. Peter Merkel is the Director of the Boston University Vasculitis Center. Dr. Ulrich Specks is with the Division of Pulmonary and Critical Care Medicine at the Mayo Clinic. The Vasculitis Foundation educates patients, family and friends of patients, the medical community and the public through its website, bimonthly newsletter, information packets, 800-number and patient support staff, and symposia. This will run in your web browser. Adobe Flash Player required. System Requirements PC-based attendees Required: Windows® 2000, XP Home, XP Pro, 2003 Server, Vista Macintosh®-based attendees Required: Mac OS® X 10.3.9 (Panther®) or newer Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/355089098 Once you register, you can also use a telephone to call in. If your computer does not have a microphone that is an option. You will need to use the Access Code and Audio PIN for your specific registration, then call one of the numbers listed below. If you do not have an access code then you need to register first. Subject: Vasculitis Defined Date: Monday, September 22 2008 Time: 10:30 AM (America/Denver, -0600 GMT) Conference Call: Audio: Use your microphone and speakers (VoIP) or call in using your telephone. United States: (702) 824-9512 Access Code: xxxx-xxxx-xxxx AudioPIN: xxxxx Australia: +61290370214 Austria: +43720880313 Belgium: +3228081214 France: +33426460175 Germany: 4989549986652 Ireland: +35315262941 Italy: +390289038656 Netherlands: +31708912549 New Zealand: +6499250408 Spain: +34911875535 Switzerland: +41435005946 United Kingdom: +442030514836