Sparking: The Vasculitis Foundation

Vasculitis research is very close to my heart because I have a very rare vasculitis disease called Wegener's Granulomatosis (WG). Yea, I am selfish because I want to see others including myself with a vasculitis disease cured. The problem? We are a very rare group. For WG, there are only 1 in 100,000 diagnosed in the general population.

The problem with having a rare disease is that it doesn't get funded. Who gets the research funding dollars? Those with diseases like diabetes, heart attack, cancer. In short, diseases that can affect everyone. Just a note: we can get cancer too...but mainly from the treatments we are given to keep our disease in check.

I am very proud of an organization that I joined when I became ill. The Vasculitis Foundation This organization has funded a lot of research for vasculitis diseases. It has funded research through a lot of fund-raisers and effort by the volunteers in the organization.

This organization's mission is to advocate for early diagnosis, leading edge treatment and ultimately a cure for all types of vasculitis. They provide members and even non-members who cannot afford the fees newsletters, consultants, and advice. Many volunteers including myself answer questions to newly diagnosed members. We have a discussion group where we help each other with medical questions about this potentially deadly disease.

Every year I get several calls from newly diagnosed patients who are scared about treatments or the disease. I have talked to them for hours, trying to give them perspective about the treatments.

Thankfully more and more patients are being diagnosed and treated. They are surviving when they used to die. But, I want more than just to survive... I want a cure. Wouldn't it be loverly.

I appreciate this chance to spark. If you'd like to be involved with a chance to write about your favorite cause, you can join social spark and check out this spark. Human Powered Cause Discovery