As many of you know, I first became ill just a couple weeks after returning from my Honeymoon in the fall of 2010. In fact, the first real unusual symptoms I noticed came on while I was in Hawaii on my Honeymoon. I had horrible joint pain and a strange skin rash early in the trip, and by the end I had started coughing up blood. I ended up in the ICU only 2 weeks after getting back home. We still enjoyed our trip and managed to fit in snorkeling, surfing, and other fun adventures, but there is no doubt I wasn’t feeling 100%. Not the best way to start your marriage.
Well, Marie and I are taking the chance to re-do our honeymoon this spring. We just booked a trip to Barbados! 9 days of fun in the sun. We’ll do some surfing, kitesurfing, snorkeling, and maybe visit some of the surrounding islands. It will also be a good vacation to rest up before the start of the Autoimmune Expedition.
Today, February 28th, is International Rare Disease day. This is an annual event designed to raise awareness of rare diseases for the general public, patients, and politicians or decision makers.
What’s a rare disease? Well, by definition a rare disease is a condition that affects less than 1 in 2000 people (or if you’re in the States, it’s a disease that affects less the 200,000 Americans). There are between 6000 and 8000 different rare diseases. Some are so rare that they don’t even have names. Wegener’s Granulomatosis certainly fits into this group. It is a condition that is estimated to affect 1 in 50-100,000 people. Lucky me! Before being diagnosed I had certainly not heard of it. Most nurses I spoke with didn’t know what it is, and most doctors will never see a patient with this condition throughout their entire career. It’s rare.
A rare disease has it’s challenges. Not many people suffer from each condition, so there may not be much research into causes or treatment of the disease. However, if you look at rare diseases as a group it’s obvious that a lot of people suffer from some sort of rare disease. It’s estimated that 50 million people in Europe suffer from a rare disease. Many conditions have similar symptoms and treatment regimes. Grouping diseases together allows for better research and treatment of diseases. I’m lucky enough to reap the benefit of some of this work already.
Recently (past few years) a drug called Rituximab was approved for treating Wegener’s. This drug is commonly used for patients with Rheumatoid Arthritis. It’s a new and expensive drug ($5000 per dose!) but it is meant to replace the harsher regime of heavy corticosteroids and chemo drugs. In my case it has worked well. Unfortunately it was still the second choice after chemo failed. My hope is that future research will prove that treatments like this should be standard and made available to everyone despite the cost. That is why I’m embarking on this fundraising trip. I hope I can make a difference and allow for some specific research to take place.
I just added more information about how to donate to this fundraising initiative under the “Donate” tab at the top. Official tax receipts will be issued by the Arthritis Society. As mentioned, all of the money raised during this expedition will go to the Arthritis Society and specific research of SARDs. Thanks for your support! – Pete