Posts by Lawrence Harris7

Luckily, I haven't been hit by it (so far), though I did stumble upon a few people online who were dealing with Wegener's, and then there was one other person fighting a different autoimmune issue...

Actually, I ended up signing up for the Vasculitis Foundation website—they have a full list of all the different types of Vasculitis there http://www.vasculitisfoundation.org/ which confirms it’s an autoimmune condition too. Thankfully, things are looking up, though they're still nowhere near where I was at the start (I went from being stuck in a hospital bed for 30 days straight to spending 10 of those in the ICU). I’m still dealing with some pretty heavy doses of medication, especially since it's only been seven months since this whole thing began.

It all kicked off with what I genuinely thought was just a standard cold, plus this nagging pain in my shoulder—honestly, I figured it was just from blasting the AC in my car during the heatwave last July. At first, they just put me on the usual antibiotics, things like Azithromycin and such, but then the shoulder pain started acting weirdly, moving around until it felt like it was hitting every single joint in my body. Then came an ear infection, or at least that’s how it felt, and my blood work just kept getting worse and worse; I must have been back to the doctor maybe twenty different times in just a six-week span. Eventually, things took a scary turn and I ended up in the pulmonology ward because I couldn't catch my breath and started coughing up blood. It took forever to get a clear diagnosis while I was hospitalized, but it turns out I had an ocular thrombosis along with this diagnosis. Since dealing with this, my hearing has taken a massive hit, and on top of my lungs, eyes, and ears, my sinuses are also struggling. As for the treatment, I'm currently on Medrol and Cyclophosphamide, along with a whole laundry list of other medications to manage everything.

Wegener's granulomatosis (WG) is actually quite rare, affecting roughly one out of every 20,000 to 30,000 people in the US. The symptoms we deal with are really just the fallout from inflammation that can hit all sorts of different tissues throughout the body, including the blood vessels, which is what we call Vasculitis.
Basically, Vasculitis is just an umbrella term for a whole group of conditions where the blood vessels become inflamed, and it can happen anywhere—it might affect the largest vessels in the body, like the aorta, or even the tiniest little capillaries in your skin. Depending on the specific type of Vasculitis you have, the size of the vessels involved can change quite a bit.
For most types of Vasculitis, doctors still don't fully understand the exact cause. While infections definitely play a role in many cases, the general thinking is that for many people, the disease might be triggered by a specific infection in someone whose genetics (along with other various factors) make them more susceptible to developing Vasculitis.

I was personally diagnosed back in September 2010, and since then, my life has mostly been a cycle of treatments, endless testing, doctor check-ups, and just trying our best to learn everything possible about this condition. If anyone else here is living with a Wegener diagnosis, please reach out and say hello.