Being diagnosed with a life-threatening rare disease is frightening. Patients and families need information and support immediately. The Vasculitis Foundation provides both in great measure: accurate, in-depth medical information about each type of vasculitis, availability of support groups, access to medical experts around the world, and an international biennial symposium when patients and families can interact with other patients and leading vasculitis physicians. The organization has superb, dedicated staff members who work tirelessly on behalf of patients and families challenged by their diagnosis. I cannot praise their work highly enough.
Almost dying has a huge impact on a person, their family, and friends. When the doctors finally figured out that I had Vasculitis, I couldn't get out of the hospital bed at all. I didn't think I'd ever be able to walk, let alone travel, or have a glass of wine with dinner. All we knew from the doctors was that I had a very rare disease that had no cure. That's when I started doing research and found the Vasculitis Foundation. They provided amazing resources and support. They put me in touch with another patient in my area who spent 2 hours on the phone with me answering all my questions and allaying my fears. With a very small staff, they put on amazing bi-annual conferences with presentations from leading physicians and researchers in the field. The staff and board are dedicated to helping patients and families and doing what they can to support research which may, eventually, find a cure for this disease.
MPA (microscopic polyangiitis) Is an ill-defined and rare autoimmune disease.. My symptoms went undetected for more than a year and nearly took my life.
Once my condition was properly diagnosed, the Vasculitis Foundation became my go-to source of information. The information gathered by the Foundation has aided my progress towards remission.
The Foundation’s 2019 International Symposium in Minneapolis allowed me to understand that I was not alone and that a large number of dedicated and talented research doctors were working to better understand ANCA Vasculitis and its treatments. The Vasculitis Foundation’s Symposium gave me hope and the determination to continue fighting this disease. Through the Foundation , I’ve helped educate my local team of doctors about a disease that they’d only read about in textbooks.
The Vasculitis Foundation is a caring organisation that is constantly adapting to meet its members needs. Their newsletters are informative and inspirational while their conferences are can’t miss gatherings of the best minds regarding all things to do with Vasculitis. Between all of the tools they employ, every member feels extra special.
I have had Wegener’s Vasculitis for almost 10 years and the hardest thing I encountered was trying to explain exactly what I have. I always had to compare it to Lupus to have the story make sense. Vasculitis Foundation Canada’s website, www.vasculitis.ca, helped take the burden off of me! Thank you for your ongoing support.
Chadwyck Chung
London, Ontario
The Vasculitis Foundation has been my go to for information regarding my 17 year olds diagnosis of Granulomatosis with Polyangiitis. I often refer my family members who don’t understand the disease to your website. I’m a nurse practitioner and my son’s diagnosis a year ago was devastating. As we worked this past year on remission, I was profoundly impacted by how little the public knowledge was out there regarding Vasculitis associated diseases. I shout my message from the roof top. Thank you for providing information and support to families!
When our son was diagnosed with a rare vasculitis we felt overwhelmed, alone and scared. The vasculitis foundation has helped us find a community of individuals and families sharing our struggle and also works hard to keep us up to date on the latest research on his condition. We are so grateful for the work they do.
I was diagnosed back in 1982. I had a blockage in my throat. My ENT had no idea what could have caused it. By doing his own research and checking with other ENTs he came up with a diagnosis of Wegeners. His diagnosis was strictly arrived at by the symptoms I had. I had seen three doctors previously who gave me diagnosis’s of asthma and stress. My dr treated me with prednisone and antibiotics which really worked . I continued those treatments until 2003. At that time my insurance changed and I couldn’t go to the same dr. I stopped going to an ENT entirely .
In 2007 I had a bad flare up and ended up in hospital with kidney failure. Again I received a diagnosis of Wegeners. Not one dr I had seen thus far ever told me to see a rheumatologist...after my kidneys were treated and working fine, I again had no dr to see. It was at this time I found the Vasculitis foundation. I learned about a symposium being held in Long Beach, California. Since I lived close by I figured I would attend. It was very enlightening and I finally found out that I needed to see a rheumatologist . I now have regular checkups with a rheumatologist and I am on maintenance drugs. It only took almost 30 years for me to get the correct information I needed to keep my disease in check. I am so greatful to the foundation for helping me get where I needed to be with my health.
When I first learned I had Wegener's granulomatosis, I felt very very much alone. After contacting the organization, I realized that someone really cared. For the first few months, officers would call me weekly and one person even visited my home. I've been in remission for many years but continue to stay in touch through the newsletter and by serving as a contact person for my area. The symposiums have been very helpful in keeping up with the latest research and treatments.
Though we have a "rare" disease, we no longer have an orphan disease. The VF has contributed much to making the public aware of the disease and providing excellent information via the internet.
Vasculitis Foundation has been a great source of information and support for me! I have a rare disease, a type of vasculitis called Wegener's Granulomatosis. I felt like I was the only person in the whole world who had it. But when I discovered and joined the VF, I was amazed to discover that there are others! I learned a lot about my illness from their website and the bi-monthly newsletters keep me up-to-date on fundraising, awareness raising, and the latest research. I am very thankful for the VF!