Category Archives: Uncategorized

September 2015 – CSS awareness by Shawna

On the 1st of every month, I host a post by a member of the CSS community so that we can get the word out about CSS and help people get earlier diagnosis. This Month’s post is by Shawna and … Continue reading

Posted in Uncategorized | Comments Off on September 2015 – CSS awareness by Shawna

Asthma Treatment Medication

This is an informational post about Asthma medications and treatments.  Always consult a doctor before beginning, changing, or discontinuing any asthma treatment.  Asthma is a serious condition that without proper management  can lead to death.   I am NOT a medical … Continue reading

Posted in CSS, Uncategorized | Comments Off on Asthma Treatment Medication

CSS awareness post August 2015 by Sheila Eddy

A NEW Churg Strauss Awareness Post for August is up and ready to be shared.  Read about Sheila’s Journey and how ‘The Cough’ lead her to her CSS diagnosis. Follow this link to Sheila’s journey….

Posted in Uncategorized | Comments Off on CSS awareness post August 2015 by Sheila Eddy

The Ugly Side of Competitive Chronic Illness

Is having a Chronic Illness really a competition?   Logically you would think not, but in some patients eyes it is… I can’t believe I even have to mention this happened in a Symposium for people with Vasculitis. I was … Continue reading

Posted in Uncategorized | 20 Comments

Information from the Vasculitis Patient-Powered Research Network

FROM the Vasculitis Patient-Powered Research Network During the 2015 International Vasculitis Symposium we had the opportunity to connect with patients and their families. One of the questions we received about joining the Vasculitis Patient-Powered Research Network most often was about … Continue reading

Posted in Uncategorized | Comments Off on Information from the Vasculitis Patient-Powered Research Network

Kathryn tells her CSS/EGPA story

The July Awareness post is finally up and I hope you enjoy the CSS life story written by Kathryn.  She shows how CSS totally changed her life and the frustration of years of not knowing what is going on on … Continue reading

Posted in Uncategorized | Comments Off on Kathryn tells her CSS/EGPA story

Day 3 — (part 1) Jacksonville 2015 VF Symposium

Due to the intensity of this day and my lack of wi-fi for the next week I will be publishing Day 3 and my end thoughts in sections.  Please be patient, it will be worth the wait. The A-team of … Continue reading

Posted in Uncategorized | 1 Comment

Day 2 – Vasculitis Foundation Conference 2015 in Jacksonville Florida

Put one foot in front of the other And soon you’ll be walking ‘cross the floor Put one foot in front of the other And soon you’ll be walking out the door Anyone remember that famous animated Christmas classic – … Continue reading

Posted in Uncategorized | 1 Comment

Jacksonville Vasculitis Symposium — through my eyes — day 1

Hey Dorthy, We’re not in drought ridden California anymore! Ok, probably just me but I am loving taking a break right now and just listening to the thunderstorm and seeing the lightening.   It’s a nice chance and a peaceful way … Continue reading

Posted in Uncategorized | 3 Comments

Jacksonville VF Conference or Bust

Guess where I am?   I feel like Carmen SanDiego right about now. (1990’s joke) If you guessed Jacksonville, Florida then give yourself a gold star. I am here to attend a 3 day conference hosted by the Vasculitis Foundation in … Continue reading

Posted in Uncategorized | 5 Comments