Sunday, May 03, 2009

Vasculitis Awareness Week May 3-9, 2009


There are so many worthy causes and a lot that can be gained by sharing information and supporting important research. I'm going to take a break from the fun craft stuff to share a cause that is important to me because Vasculitis is a disease that has touched my family. Let me share our story . . .

At 17, my son began losing weight - no one thought much about it because he was just a bit chubby and the weight loss seemed to begin about the same time he joined the track team and began training to throw the discus. A couple of months later, he had what everyone thought was probably Mono - he had all the symptoms but the tests showed no Mono. But since his energy level seemed to return to normal, no one thought much about it. In the meantime, he continued to lose weight. A few months later, he started complaining of pain in his ankles . . . and then the pain spread to various other joints. And the fatigue seemed to come and go. He finally reached a point where he was suffering from joint pain, fatigue, a high fever that would spike at night but subside by morning, AND stomach pain with nausea . . . but still, the symptoms were vague and intermittent. His doctor ran lots of test and told us lots of things he DIDN'T have . . . then referred us to an infectious disease specialist. Who told us we might be looking at Juvenile Rheumatoid Arthritis and we should see a Rheumatologist. Who told us he definitely did not have JRA but she found a new symptom . . . blood in his urine. So we were referred to a urologist. During the 4 month period while all these tests and specialist visits and so on where taking place, Drew finished High School, turned 18, and moved into a dorm to begin his freshman year of college. By the time we got the referral to the urologist, he had lost a total of 80 pounds and could barely walk up a set of steps. He could barely open a bottle of soda. Then, a new symptom . . . his fingers began turning ice cold which cause unbelievable pain. At that point, I took him to the ER and luckily, they admitted him. Eleven days, one hospital transfer, 2 biopsies, and dozens and dozens of other medical tests later - we finally had a diagnosis of Pauci-Immune Necrotizing Cresentic Glomerulonephritis (a kidney disease) and a few days after THAT, we had a diagnosis that was the underlying cause of the kidney disease AND the joint pain, weight loss, fatigue, etc . . . Drew was diagnosed with Microscopic Polyangiitis or MPA, for short. I won't go into all the details but I am happy to say that today, he is in remission and has fully recovered kidney function.

So, what the heck IS Vasculitis? THIS article will give you a better answer than I ever could. Oh yeah . . . Dr. Gregory House (you do watch House, right?) LOVES to suggest Wegner's, Churg Strauss Syndrome, or any number of other forms of vasculitis while solving his medical mysteries.

Alrighty! I've bored you enough for today BUT I may post some other info or links about the topic later this week . . . feel free to ignore them if you would rather just see my stamping projects, okay?

5 comments:

June Annand said...

Oh Comeka... it's heart-wrenching to read that your family went so long without an answer. It must have been so painful, confusing and frustrating for your son to endure, but I was so happy to read that he is doing so much better now! I will read the article to learn more about this condition - thank you for bringing it to my attention to help me understand what this is all about. Blessings and continued good health to you and your family...

JulieA said...

I'm so glad that you posted your story. It's important to get information out to people. I'm so thankful that Drew received a diagnosis within months. Hugs to you and yours...
Julie

Jess Lundahl said...

Wow, it sounds like your family has been through a lot. I'm sure you are very thankful that you finally received a diagnosis for your son and that he is in better shape.

Jamie Hurley said...

Prayers to you and your family for God to continue to keep him well.
God bless!

Anonymous said...

Please let me know more about your son as i have a lot of the same problems myself.