Vasculitis foundation video interview is on Youtube

A little while ago I let you all know that Alicia did a Skype interview with Ed Becker on behalf of the Vasculitis Foundation. They have a Youtube channel called vasculitis awareness. This is how the Vasculitis Foundation explains the channel.

The purpose of this effort is to spread awareness by sharing vasculitis stories about some extraordinary people to highlight the impact these chronic conditions have on vasculitis patients and also their families, friends and loved ones. Sharing with the world, the pain, the fear, and even the joy of finally getting a diagnosis and learning what is happening to their body. When you watch these videos, you will learn that people from all walks of life are represented. There is no cure, but with your help there is hope.
— Vasculitis Foundation

There are over 70 videos on the Youtube channel and now Alicia and I are on there too. Our interview is split into two parts. The first video introduces us both and goes on to describe Alicia's initial symptoms and how the Wegener's Disease progressed.

In this video, Alicia and Barry Forshaw from the U.K. talk about the onset of symptoms that plagued Alicia. A persistent cough, runny nose, and fatigue indicated nothing more than a bad cold.

However, a more serious diagnosis was awaiting her. Alicia would soon learn that she had a rare and serious autoimmune disease called “GPA Wegener’s”.

During the initial phase of her illness, her work colleague (later to be her husband), Barry, observed the dramatic and rapid decline of her health. Although they didn’t understand vasculitis, her co-workers realized that she was fighting something extremely serious.

In this short video Barry and Alicia talk about how her life changed rapidly once she began battling vasculitis.
— Vasculitis Foundation

In the second video Alicia and I talk about building this website and writing my book.

In this video, Barry talks about how he wanted to share Alicia’s story to help awareness about vasculitis and let other patients learn through their experience.

He started with a website and eventually undertook the challenge of writing a companion book that included interviews with family, friends and doctors.

In the video, Alicia ironically describes how she had to read the book about her experiences to fill in her lost memories when she was so ill.

They also share photos of their beautiful daughter, Audrey.
— Vasculitis Foundation

Unfortunately our Skype connection wasn't optimal so Ed, who was our interviewer and editor, had to do a lot of work to get the videos up. Thanks for all your hard work Ed!

I hope you enjoy our videos, and if you do please let me know!


Vasculitis awareness video released

As I mentioned  earlier in the week, the Vasculitis Foundation in the USA has launched Vasculitis Awareness month in May 2014. They have produced a video to promote awareness of vasculitis and I have included it here on the blog.

This is what the Vasculitis Foundation have to say about the video.

We are pleased to introduce the 2014 Vasculitis Awareness Video, which celebrates the Vasculitis Foundation’s outreach efforts worldwide.  We hope you will share the video with your family, friends, colleagues and everyone you know!  A special thank you to all of the participants who generously shared their stories and experiences in the video.  

Wegener's Granulomatosis explanatory video

I recently discovered this video online that explains Wegener's Granulomatosis and microscopic polyangiitis. In very easy to understand language, with very little medical jargon, it provides a brief overview of the disease including the symptoms and treatment of the disease. It it one of 10 videos exploring vasculitis and related diseases.

The video has been produced by the Khan Academy, a not for profit organisation providing free education resources for students, parents and teachers. 

I think that this video would be a great introduction to Wegener's Granulomatosis for those new to the disease.