More common than you think. More serious than you know.
SUPPORT. AWARENESS. EDUCATION.
Complete this sentence:
What I want others to know about Vasculitis is...
It affects every part of my life!
Please stop asking me if I'm feeling better.....I just have varying degrees of feeling unwell
...most doctors will never see a case in their lifetimes so it is very hard to get a good diagnosis and a proper treatment plan in place.
It is not a death sentence and it does not have to define you. You have to take care of yourself and listen to your body, but you can lead a normal, happy life. It is super important to find a good Doctor who knows what they are doing.
It's weird, unpredictable, and they cannot comprehend it unless they have experienced it.
The pain of people not knowing and understanding the gravity of the disease and treatment is worse than living with the disease.
Never give up until you get the quality of care you need to make you feel better!
Son/WG. No, he does not look ill, but if you could see his insides, well, that's a different story!
Yes, I really am sick
It haunts you
It is for real. No, we don't look sick much. Sometimes we hurt. Sometimes all we want to do is sleep. Please don't judge.
It makes you feel waaaaaaaay older than you really are. And it never really goes away even when they say you are in "remission".
It is no longer a death sentence if you find a doctor that knows the disease. A semi normal life is possible but you have to advocate for your self. Do your own research and find a doctor that knows the disease. Be kind to yourself and take one day at a time.
We are fortunate to live in a world today that has medicines that are tried and true. There is life with Vasculitis. Rest when you need to and do not feel guilty . Follow a diet if you have to as that makes you feel better. Just love yourself and know you did nothing to cause this. It is just a roll of the dice. The most important thing for me is KEEPING THE FAITH.... without that I would be nothing... Hugerzzz to ALL my fellow men, women and chldren with Vasculitis. We are super special in ways we do not understand. Enjoy each day and the journey with Vasculitis. Always something to be thankful for. smile emoticon I am thankful I am still here through the grace of God and God leading my Rheumy doctor in how to deal with my disease.
...that every person will experience the disease and respond to treatment differently. For some, it is very treatable; for others, it is debilitating
Thank you to everyone who contributed, to the Vasculitis Foundation and Brandon Hudgins for the awareness--NEVER GIVE UP!