Evening All

I've wanted to post about this subject for a while now so please excuse my ramblings in advance and everything below is said with the upmost respect for all of us diagnosed with this diease...


I was diagnosed almost 12 years ago with "limited" Wegeners - it likes my nose and hasnt spread further than this (thanks, in part to the AWESOME team at Addenbrookes and various drug therapies).

I dont like the term "limited" as it somewhat demeans the experiences of those of us who have "limited disease". My disease may be limited to my nose/ sinuses but the effect having GPA has been in no way limited. Having this disease has never been easy. The effect of having this disease has had an incalcuable, devestating, joyous and profound effect on my life.

Recently i was on a call with a number of young people with the disease and the one thing that really struck me was those who were limited felt like they didnt have an equal right to explore or voice the effect that this disease has had on them as so many have had it worse than them.

I thought this was interesting. It has also led me to question why the term "limited" disease is allowed. Now, dont get me wrong i know how incredibly fortunate i am that my diease has not spread BUT my disease is also persistently grumbling (a term coined by Prof Jayne). It means i am complicated. It means my diease is especially devious, sneaky and unpredictable. It also means i have not been taken seriously by some of my doctors when i have felt a flare starting and told my labs are normal, come back in 3 months time.

I'm putting this out there because i dont have the answer but i want to know how we can address this inequity and put the term "limited" to bed forever.

Vasculitis awareness months starts soon and i will be exploring this topic both on facebook, among other support groups but it will also be something that i discuss with my treating teams.

Please let me know your thoughts and experiences.

If we could change the term from limited, what word would we prefer?
How should doctors work with those who have limited disease?
How does being labelled "limited" or "severe" affect your self image?
Has being labelled as "limited" or "severe" affected the trajectory and treatment of your disease?

As i said at the start of this post i hope i do not offend anyone with my thoughts, i just want to open this discussion up to a wider audience.