Why I'll Be Walking

On September 22, 2012, I will be participating in the 2012 Alzheimer's Association Walk to End Alzheimer's, and am committed to raising awareness and funds for Alzheimer research, care, and support. Currently, more than 5 million Americans have Alzheimer's and that number is expected to grow to as many as 16 million by 2050. Our future is at risk unless we can find a way to change the course of this disease.

Beyond the statistics, and the numbers, this is personal. I have seen Alzheimer's take its toll on a number of people, including my grandmother, my wife's grandmother, and now watching the slow decline of my own father.

Walking on September 22 won't be easy for me either. I had foot surgery at the end of June. In August, my foot was still bandaged and I was walking with a cane. Only on September 2nd did I actually walk for a full mile. Sure, I was sore, but that's what ice packs are for. I still have a screw in my foot, but that's nothing compared to Alzheimer's. I'm doing this.

But, I need your support! Please click this link and make a donation to help the Alzheimer's Association advance research into prevention, treatments and a cure for Alzheimer's. For the millions already affected by the disease, the Association offers care, education, support and resources in communities nationwide.

Thank you for your help!

Happy Rare Disease Day!

Today is Rare Disease Day 2012! Who knew there was a special day set aside just for talking about rare diseases? I only just found out about it minutes ago, and just in time to celebrate.

In honor of Rare Disease Day, I decided to check out the Rare Disease Database to make sure my rare disease was listed... and it is! Gilbert Syndrome's listing is there, and fairly accurate:

Gilbert syndrome is a mild genetic liver disorder in which the body cannot properly process bilirubin, a yellowish waste product that is formed when the liver breaks down old or worn out red blood cells (hemolysis). Individuals with Gilbert syndrome have elevated levels of bilirubin (hyperbilirubinemia), which occurs because they have a reduced level of a specific liver enzyme required for elimination of bilirubin. ... Bilirubin levels may increase following stress, exertion, dehydration, alcohol consumption, fasting, and/or infection.

I did learn some other names for Gilbert's, including, Unconjugated Benign Bilirubinemia, Meulengracht's Disease, and Familial Nonhemolytic Jaundice. My personal nickname for it - Semi-Chronic Fatigue Syndrome - has not yet made the list. I call it that, as when my bilirubin levels rise, I feel it more as fatigue (and often hunger) without exhibiting too many outwardly visible signs of jaundice. It also makes my urine look like thick orange paint. Aren't you glad you asked?

Unfortunately, according to the Patient Organizations Database, there is not yet an organization dedicated solely to Gilbert's, although there are a few general liver and genetic disease organizations that would gladly accept me as a member.

So, how will you celebrate Rare Disease Day 2012? Visit rarediseaseday.org for fun party ideas, or maybe some serious life saving information.