The beginning of my adventure

I wanted to start posting things that I will be doing in the future on this site, as it pertains to HHT. I was praying today, as I often pray for my siblings, who are affected by HHT, and was asking the Lord, show me, what can I DO to be proactive in this?
I have been affected by HHT my entire life, I didn't know it all that time, as my father was diagnosed at the age of 43. A brain avm almost took his life, and that is when a doctor diagnosed him and thus our family knew what all these "weird symptoms" were. My father passed away about five weeks later from a heart attack, we do not know if that was related to HHT or not. Both of my brothers have had brain avm's (arteriovenous malformations) and aneurisms when they were born. This, the doctors told us, was a one in a million chance, to have two brothers have the SAME, EXACT brain complications. Little did we know that with HHT it is more like a 50/50 chance of two brothers having the same brain issues if their parent had it.
Since our family learned of the HHT diagnosing of my father we have been through a lot. I don't know if I could handle being the one with HHT. I look at my younger sister and tell her how much I admire and respect her attitude and faith in this disorder that has, in a way, taken over her life and my brothers lives. She is a rock, I love her so much. My younger brother had complications from the aneurism/avmHereditary that they found in his brain at 5 months old. The location was in the middle of his motor, speech and vison field. He has been left disabled from this operation, labeled as mentally retarded, due to his low i.q. His journey has been a long one in his short life, a journey that we, as his family embarked with him, along on the ride. What joy, sorrow and character has followed this young man. He requires 24 hour care and he will never "get better" as some would say. I see God in him when I look in his eyes, he is our angel on loan, as my mom says. :)

When something so prevalent comes into your life, you ask a lot of questions. I am someone who needs all the information to feel "okay" and to deal with it. We all deal with it in our own way! This is my way everybody. :) I will keep you all updated as to what the new adventures I am going to take to bring awareness to others about this disorder and am inviting you all along to learn and to get involved. Check out the HHT website. It is so user friendly and helpful in answering questions about HHT and what you or others can do to help. Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder of the blood vessels, which affects approximately 1 in 5,000 people. Many times it goes undiagnosed as the symptoms can complicated and thought to be something else and many physicians do not know what it is. I am not downing the medical professionals or field, quite the contrary. I believe in what they do, but they can only help what they know about. When I first went to my doctor regarding this, he didn't have a clue what it was, I told him to look it up and learn about it because I didn't know anything about it at that time either. Since then I have learned a lot and with the passion that I have for my siblings and their health I have been doing various projects to get the word out there. Writing our legislatures, senators, congress, is one thing. This is to bring their awareness to the need for funding for research and the development of more HHT centers. There are only 8 centers in the states, we live near one, at OHSU in Portland, thank you Lord! That is where my entire family goes to see the specialists and get their tests and treatments done. They are so wonderful in what they do! Bless them! In the near future I have some more public ventures that I want to check out, start getting some movement going. In my next entries I will give you more info on what HHT is exactly, fact sheets, etc... mostly from the HHT website. Then I want to show you some ideas of what I want to run with in getting awareness out there about HHT. Imagine when people didn't know what cancer was? That is what I think of...
Please stay tuned for more to come, God Bless and take care.