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Support

Mission one of the Vasculitis Foundation. Support the patients with vasculitis and their caregivers.

This chapter will pursue that mission in several ways.
  • First and foremost, we have each other.
  • We have monthly Meetings, where you can share information with other patients and friends of vasculitis.
  • We have a Calendar, where events will be posted.
  • We have Online Groups for staying in touch by Email (Google, Facebook, etc.)
  • In addition to being a member, you can be a Contributor to the Vasculitis Foundation and help fund research.
The group is greater as a whole than its individual members...

  • Also, I have linked to a number of other support groups on the Education page where I list links for specific diagnoses.
    You can click here: Vasculitis (Specific diagnoses)
More ideas are being collected on the Support Ideas page of this website. Here are some recent posts to that page:

Support Ideas

  • List Resources We can list the best places to eat healthy in NM since diet is important for vasculitis patients. We can list the places to get comfortable shoes, because peripheral neuropathy ...
    Posted Feb 22, 2009, 4:38 PM by Joseph Carpenter
Showing posts 1 - 1 of 1. View more »

Check out our chapter CALENDAR, and find out when the next meeting is planned.

Karla and Meaghan both came away from the 2008 Symposium with the knowledge that "you are not alone." By associating with others who have vasculitis, or who know about it, you will be ahead of the game. Instead of stumbling in the dark, alone and afraid, this association with your peers can help shed some light on what is possibly one of the most traumatic experiences you may face. And yet, the focus here is not to dwell on our horrors and sorrows. Yes, we will shed many tears together, but we will also share our joys and triumphs. Better than anyone else in your life, the people who come together here will truly understand what you are going through.

As patients or as caregivers, there are things we keep inside and cannot share except with others who have walked a mile in our shoes.

Joseph is a caregiver, and recognizes that he cannot always understand what his daughter is going through. He also understands how the needs of caregivers are not always the same as the needs of patients. At the symposium, this issue was addressed in a special session. We saw everything from tough love to handing out tissues. While information is mostly focused on the patient, this site will grow to also include resources for caregivers and family affected by the vasculitis diagnosis.
The idea is to compile a list of doctors in New Mexico who already have some familiarity with vasculitis. This list becomes a foundation of support for vasculitis patients in NM. Eventually, we hope this list grows to the point that vasculitis awareness is uniform among all doctors. They should either know how to treat vasculitis, or know where to get specialized help with their patients who have vasculitis.
When my daughter received her diagnosis, and I got started learning about all this, my education in vasculitis was more like a brain fever. I am still a bit obsessed with learning more every day actually. As I discover those resources, I will list known good medical resources, like PubMed, and MedLinePlus, and Natural Database. I will also share my discoveries about really cool technologies that will help you to collect and organize your online research.

Although it is not possible to study each individual type of vasculitis separately with limited resources, our hope is that information learned in studying several types of vasculitis will be beneficial for understanding and treating other types of vasculitis as well.
  • Chapter online tools
This website is off to the races. I am building it fast and hard now, to give it a jump start. The goal, however, is to recruit you to participate. Commenting and authoring articles in the blog, getting your story published on this site, and sharing in the groups. By getting involved, you will give and get a wide assortment of information to and from many people. As that pool of knowledge develops, we will be fulfilling the goal of promoting awareness and education.

If you thought you were alone, then those days are over. If you want them to be. Others are here, and by participating at the chapter level in person as well as online, you will never have to be alone with this disease again. So grab your rubber ducky and come on in. The water is fine, the sharks have been sent away, and this pool party can last a lifetime. :o)

Other Resources

List of diseases | Vasculitis Foundation
The VF has developed descriptions of the different types of vasculitis. This information includes a definition of each disease, symptoms, diagnostic tests, therapies, and prognosis. Additional information is available through links to other organizations.
http://www.vasculitisfoundation.org/vasculitisdiseases