One in Five people in the world have a pituitary tumor --- that's 20% of the world. Did you know that? Kenny is one in five. That's pretty common. It's not a rare thing that he has and people with these tumors that are treated properly, live long, normal lives as he is.
One of the themes this year in our house is education...specifically about pituitary tumors/dysfunction...so that we can battle this properly and know as much as we can about what life will be like.
Two years ago when we found out that Kenny had a pituitary tumor, I began reading, researching, studying all I could on the Internet. One of the best sites I found was http://www.pituitary.org/. It's for the Pituitary Network Association (PNA) and has fantastic material. It's a group we could have joined then, but didn't.
The neurosurgeon at Northwestern that we selected two years ago as a second opinion was apart of this group...and ultimately did Kenny's surgery in August. Back in August, we also learned from Kenny's cousin that this was "the" organization for pituitary issues.
This organization strives to help people with pituitary tumors and problems related to them. It's interesting to learn some facts:
** One in Five people in the world (that's 20%) have a pituitary tumor. Kenny is one in five people that have a tumor like his! That's a lot of people in this world.
** Many people go on for years living with signs and symptoms before they are ever told they have a tumor. They are treated for other problems that the tumor is causing, but never the tumor itself. Kenny is lucky...our general doctor immediately sent him for a CT of his head when he complained of headaches 2 years ago.
**Pituitary tumors are typically benign (something like 99%) but these tumors still do damage to your body and have long standing effects that require one to take medications, typically. It's a fairly recent law that says doctors must register all benign brain tumors in a registry --- this is major in learning more about these tumors.
** The pituitary gland is the master gland in your body...and it does so much that you never realize. We are lucky that it's functions can be replaced by taking medications daily. Looking at Kenny, you would never know he walks around with a dysfunction such as his. He continues to function normally, in quite the same way a diabetic would function, for instance. He takes medication, in a timely manner, to help his body function normally. Diabetics do the same thing, they take medication, in a timely manner, to help their bodies function normally.
These are just some of the major facts. We just joined this organization...we felt it was important to be apart of PNA...to learn...to support their amazing efforts in battling pituitary dysfunction. This organization and their members could some day find a cure or better treatment or better medications. It's "our" organization now. I now wear a bracelet that says one in five on it.
With our membership, came a book all about pituitary tumors, treatment, hormone imbalances. I can't wait for both of us to read through all of it. I KNOW that book will help us tons. There is no class you take with your doctors when you get a diagnosis like this...they tell you alot, but they can't teach everything. It's up to you to be proactive. So we are. Kenny took a look at the book the night we got it and just from flipping around for 10 minutes, he said "This has SO much information it in." We both look forward to reading it and learning....about him being one in five.