May is vasculitis awareness month and many of you know I am currently doing well, however many are not. I have yet to talk to someone about my disease from outside of the specialty medical field who have even heard of it before. When I was diagnosed I certainly hadn’t and I have since met many nurses & doctors who have not been familiar with it either. Here’s a hint, if you can’t get a pulse in your wrists or a blood pressure reading in your arms and you’re still upright, then you might have Takayasu’s (it used to be called pulseless disease). Awareness is so important for timely diagnosis and early intervention. Once damage is done to arteries, it cannot be reversed and surgery is often a bandaid.
As part of this months activities I did get to meet a sister TAKer (Takayasu Arteritis), Leslie Scott-Lysan at an educational event. Leslie is the first person I’ve met in real life with Takayasu, although there are many who have found each other online. At the meeting Dr. Paul Monarch from the vasculitis clinic at Boston Medical Center presented the latest medical & drug options for many of the vasculitis sub specialties.
For those of you finding this page at an early stage in being diagnosed the best place, I’ve found, to chat online with peers in the same boat as you is the vasculitis foundation Facebook page. You ‘ll find fellow patients willing to give advice & resources suitable for your particular issue and geographic area. There are people on there from around the world.
Other posts you might like:
1. Rare Disease Day
2. Influential Reads that got me started in Macrobiotics
3. Mindfulness An Introduction