1999 Overview of vasculitis diagnosis by AAP

http://www.aafp.org/afp/991001ap/1421.html

This article is dated by a decade, so the treatment protocols will need to be updated. However, the text remains a good overview for the general medical professional who needs to make the diagnosis.

It is also, in my opinion, a useful overview for the patient who is still in the "mystery diagnosis" phase of the vasculitis experience. Feel free to print this and share it withe your primary care physician, or specialist. Especially if any of the symptoms mentioned here seem familiar to your condition.

As always, DO NOT DIAGNOSE YOURSELF. A proper diagnosis requires the experience and training of a medical doctor with the resources for proper medical tests to identify these medical symptoms.

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Rheumatology Article Aggregator

An aggregator collects information from multiple sources and presents it in a unified way. This tool collects medical articles from different sources, and presents them under their category. E.g. Rheumatology, Pulmonology, etc.

This website was suggested to me by Suzanne DePaolis, a vasculitis patient who finds it useful for helping her keep up with all the medical news related to her condition.

Perhaps you will also find it useful. Here you go.

Rheumatology - MDLinx - Rheumatology Journals, Rheumatology Research Articles
http://www.mdlinx.com/rheumatology/

Awareness Idea: Gift cards

What if every vasculitis advocate (patient, family, caregivers, friends) carried with them a booklet with half off coupons for some national chain, like Target, or Subway, or whomever the partnership can be set up with.

Then when they have the vasculitis talk with some new person, they have an immediate way to raise funds for vasculitis with them, right there on the spot.

Ideally, these coupons require someone to put their name and contact information so we can send them more information about vasculitis later as a follow up. But the coupon itself is immediately redeemable, so there is an immediately useful reason for them to buy the coupons.

The advocate submits the money as a donation to the VF, and collectively we might be able to raise an additional several thousand dollars.

I need to share this idea with Bob Sahs, the new Vasculitis Foundation Board President.

I will get back to you guys if this pans out.

-- 

--

Joseph Carpenter

Parent, daughter with CSS (DX March '08)

New Mexico Chapter Leader

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

New Caregivers Online Group Forming

This new group will initially be Email based, with some tentative plans for a secure forum archive later. This is in the works, and will be available soon. Tell your spouses, boyfriends, girlfriends, adult children, and whomever has been helping you keep track of your medications... Their voice will be heard.

You have seen the online groups for patients, like Vasculitis Survivors, and CSSISG, and Saavy, which are also visited by caregivers. No reason to stop participating in those places. But some issues are specific to caregivers and caregivers are supposed to be strong and not unload on the patients, right? Well, at least there are some thoughts and feeling we deal with they are better of not knowing.

We caregivers have our own special needs that require care and feeding, or chicken soup for the soul, or sometimes just a compassionate ear attached to someone who understands.

Soon, Autoimmune Vasculitis Caregivers will have a place to call their own. A place to laugh, cry, and lift each other up... virtually... and if kind words mean anything, literally too.

When it is up and running, caregivers can look forward to more posts like this one:

Caregiver depression: Prevention counts
Caregiver depression — Find out how to prevent and cope with caregiver depression.
http://www.mayoclinic.com/health/caregiver-depression/MY01264


For the latest health information, sign up for Housecall, Mayo Clinic's free weekly e-newsletter.
Sign up for Housecall


Stay tuned. NMVasculitis.org will announce it when it arrives.


: Joseph

Update: The group I just mentioned has been created. Caregivers can find it here:

Autoimmune Vasculitis Caregivers
http://groups.google.com/group/vasculitis-caregivers

Second Update:

The powers that be are discussing the specifics of how to set up this forum. It is live and will go online for general use, but not yet. When all the questions have been answered, I will post an update.

Public Transport options in Long Beach CA

I realize not everyone is going to be able to attend the symposium, but I will be sharing links to this with other people, so bear with me here.

If you are going to Long Beach CA at the end of the month, you would want to know how to get around. Here are some public transport options to get you all around the town:


Getting Around

Long Beach Transit
Long Beach Transit operates a Transit Information Center at 130 E. 1st Street, Southeast corner of 1st Street & Pine Avenue in the Long Beach Transit Mall.

http://www.lbtransit.com/services/passport.aspx

Telephone Information
Your friendly Transit Advisors are only a phone call away. Call Monday - Friday, 7AM to 6PM, and Saturday, 8AM to 3PM. We are close on holidays. Telephone information offers you:

Transit trip planning
Customer relations
Long Beach Transit Main Office
The administration office is located at 1963 E. Anaheim Street in central Long Beach. Telephone number: (562) 591-8753. Office hours are 8 a.m. to 5 p.m. Monday through Friday.

Operator Assistance
562-591-2301
Monday-Friday
7 a.m. to 6 p.m.
Saturday-Sunday
9 a.m. to 6 p.m.
Closed on Sundays & Holidays




Dial-A-Lift
Long Beach Dial-A-Lift is a curb-to-curb, shared ride transit service exclusively for the mobility impaired residing in and travelling throughout the cities of Long Beach, Lakewood and Signal Hill.

Who is Eligible for Dial-A-Lift Membership?
Residents of Long Beach, Lakewood or Signal Hill, who are at least 18 years of age, permanently mobility impaired and unable to board or access the Long Beach Transit fixed route bus system are eligible to apply for Dial-A-Lift membership. Persons must be able to wait at a curb up to 30 minutes. Gurney or door-to-door services are not provided by Dial-A-Lift.

More information:
http://www.lbtransit.com/Services/Dial-A-Lift.aspx

Call 562-591-8753 for your Dial-A-Lift Application

Reminder: NMVasculitis Chapter Meeting on July 15th at 6PM

We will once again go to The Range Cafe:

The Range Café
2200 Menaul NE, Albuquerque, NM
(505) 888-1660

For more information about this location, see the Meeting page of the chapter website:

http://www.nmvasculitis.org/Home/support/meetings

This will be our final meeting before Meaghan and I travel to Long Beach, CA at the end of the month to attend the 2010 All Star Vasculitis Patient and Physician Symposium. Huge amounts of knowledge are available at this event from physicians, patients, and caregivers. If you really want to get a handle on your condition, this is one of the best ways to make that happen.

I extend a special invitation to any one who also plans to attend this conference. We could all meet for lunch, or at least we should be able to recognize each other while we are there. I will be the very tall guy handing out NM Chapter brochures and taking lots of notes! :o)

Or, you can come to our monthly meetings and propose a list of questions. I will write them down and try to get you some answers. If you cannot come to a meeting, send your questions to me via Email or post them to the group via our Google Groups list. Putting your questions out there is the first thing you can do to seek an answer.

Hope to see you at the next meeting!

Joseph Carpenter

NM Chapter Leader and chief dishwasher.