5 Facts!

Since I haven't written for 5 days I have 5 things I need to share about Alpha-1 so here it goes....

Here are some quick facts...
1.) Alpha-1 is a genetically passed disease from parent to child that is passed through generations.
2.) Alpha-1 Affects males and females equally as well as race.
3.) Alpha-1 Affects 1 out of every 2,500 people in the U.S. which adds to approximately 100,000 people.
4.) Approximately 20 million people carry the genes that can cause Alpha-1, normally they do not show side effects but can easily pass it on to their children
5.) 10-15% of Liver Transplants are because of Alpha related genetic abnormalities.

These facts always interest me, many people don't know what alpha-1 is and many are misdiagnosed, these numbers do not count those misdiagnosed and they are already large, imagine if they did. It is our job as advocates for this just under 50 year old disease, to become known, to everyone, so the suffering can stop and a cure can be found!!

Here is today's personal story of how Alpha has effected my family and I:
It took many years for my family and I to discover that this disease was the culprit of many health problems that my family was struggling with, my dad in particular. My dad for many years was one of the misdiagnosed, one of the people that was told it was COPD or just was experiencing the effects of smoking from when he was young, this is the story many people get before finding out what is truly wrong! It took us 4 years to find out what was truly going on, when we did their was a sense of relief, at least because we knew what was going on now, and knew how to treat it. Being diagnosed with Alpha-1 is actually a simple process that just involves a blood test, if only my family had known about Alpha and how easy it was to be diagnosed, we could have began treating earlier. This is why the word needs to be spread, so treatment can be received earlier and lives can be saved!!

Some Exciting News... Yesterday Pennsylvania Governor, Tom Corbett, Declared November Alpha-1 Awareness month in PA. This is a huge step in the right direction for advocacy, many states are recognizing November as awareness month and more continue to add onto the already growing list!! Here is the article that was posted on Alpha-1.org!!
http://www.alpha1.org/latest-news/pennsylvania-s-governor-declares-november-as-alpha-1-awareness-month

Well all for now, back tomorrow for some more information and continuation of Alpha-1 Awareness Month!!

 

Comments

Post a Comment

Popular posts from this blog

A Special Place

Image
It has been way to long since I have written. My senior year has taken over my life! Since I last wrote school has started and Senior year is going much better than Junior year ever did. I love my classes that I am taking of course with exceptions here or there and I am just so thrilled it is my senior year I think I will be able to look past any negative situation in some positive form. Marching band and School are taking up all my free time. There is no time to be messing around, I am at school, doing homework, at a rehearsal, lesson or practicing it seems. So to take a break from the crazy month that it has been my family and I are going to be traveling to our favorite place! We will be spending the weekend in Vermont. There are so many memories there with my family and I feel like a part of me grew up there. Every winter my family would travel up there to ski until skiing became impossible for my family. With Dad having Alpha one of the things he truly loved to do has been taken aw...
Read more

Day Eleven

Image
Day 11- A Picture of your Best Friend Since I will be away this weekend I have decided that I will post for the next two days awhile! My Mom and I! My best friend in the whole world is my Mom! No matter what life brings shes always the one there helping me to get through it! I can tell her everything!! She always puts me first and always is there for me!! I look up to her everyday! Love you mom! "A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts." ~Washington Irving
Read more

For Nothing is Impossible with God!- Luke 1:37

"You are exactly where God wants you to be at   this very moment. Every Experience is part of   his divine plan." This quote has hit home with me the last few days. Its words speak to me. There are so many days when I question why things are happening in my life or why things can't just work out a little bit easier but this quote reminds me that they are working out a little bit easier then I like to think they are. It reminds me that everything I do and all the experiences I go through are part of a bigger plan and a bigger picture. Some experiences I never question because they are fun and don't bring me any emotional upset or pain. It's when the difficult experiences come that I begin to forget this quote. I begin to forget what my life really is about. It is not just that bad experience that defines me. There is so much more that defines me and my life. I am defined by the way I react to the situations rather than by the situations themselves. ...
Read more