Video, Family, My hero, and the holidays...
Once again, I have failed to write for almost a week, I keep promising to get better, I'm not going to promise that today but I am going to challenge myself to write alittle more often. This week has been a crazy week let me tell you!! But we are coming up on Thanksgiving which is always a welcome break and a time to reflect. Well more on that later time to get to a few facts about Alpha-1, I believe I owe you 6 for my 6 day absence of writing! So here it goes...
Post for November 8,2012
Below is a video that the Alpha-1 Association posted on their facebook page. I found it rather interesting to watch, its somewhat humorous as well. I find peoples responses to the awareness of alpha-1 to be similar to the ones I receive every time I bring it up to some one knew. Just finishhing up my first semester of College I have faced this odd moment when you mention that your family is affected by Alpha-1 and you get the "you have 5 heads" look for the next 30 seconds until you start explaining. So take a look at this video and see what people have to say....
Post for November9,2012
My personal Struggle with Alpha-1 is not from a health stand point but from a different stand point. My view point comes from the standpoint of a daughter, a niece, a care taker, and a loving family member. Someone who takes all of this in and never knows what might be next, what the next step might be and how it might further impact my family. I some times find this to be a daunting task, I am not going to lie, but when I look back at all the things I have been through because of Alpha-1 affecting my life, I find I am a much stronger person ready to tackle the problems of the world with a smile on my face. Some days that's hard, days when you get bad news, you can't do something because it is just impossible to coordinate with all of the medicines and physical activity, or days when the stress just gets to you but all of those experiences have made me, me! I wouldn't be me if it wasn't for alpha-1. My life would look vastly different, I may not have met some of the people I have, wouldn't have experienced some of the great things I have gotten to experience, and I would not be nearly as connected to my family. Because of Alpha I have learned that family is everything! Yes Family is everything to me, something a lot of teenagers and college student struggle with. Sometime I find myself getting upset at something my parents are saying or doing but in the end I remember never to go to bed angry with them, never leave without a hug and kiss goodbye, and never hold something against them. I do not know what is next, there for I need to take advantage of every opportunity I have to enjoy my family, enjoy the moment and love each little thing that we do together. Alpha-1 has been a personal struggle for me, it has taken me all 4 years of dealing with this of getting to a point where I can accept that this is part of my life and there is nothing I can do to change that, but I can change how I view it. I choose to view it as an opportunity I have to love each moment of each day and become close to my family. Because after all FAMILY IS EVERYTHING!! Love you guys!!
My Dad's Side of the Family
My Mom's Side of the family
My Parents and I
November 10,2012
How do you get alpha-1 you ask... well here is the answer!!
Since Alpha-1 Antitrypsin Deficiency is an inherited disorder, it occurs when both parents pass on a abnormal copy of the gene to their child. A father and mother who are both carriers (MZ) could expect to have a 50% chance of having a carrier, and a 25% chance of having either a healthy or a deficient child. With the birth of each child, the same percentages apply. Therefore, it is entirely possible for a MZ father and a MZ mother to have four children, all of which are ZZ or all of which are MM. Or on the other hand, it is possible for this same father and mother to have 1 ZZ child, 2 MZ child and 2 MM child as the percentages imply. If one parent has the ZZ genotype, and the other has two normal copies of the gene (MM), all of their children will have the MZ genotype.
Information found on (alpha1.org)
November 11,2012
One of my hero's has Alpha-1, it's my dad! My dad has done so much with me and means so much to me. He has always done anything for his little girl, always putting me first. He has taught me so many things that are life lessons that I will forever have with me! He has taught me things that I now enjoy as major parts of my life, or have in the past, he has taught me to ski, something I still love today. He has taught me to have a love for everything I do, and do it right, put everything you have into it, don't half-ass it, it only creates more work in the end. He has taught me to never give up, never quit. I have learned to be passionate about what i do. My dad is always loving, always there, even when it doesn't seem like it. He supports me in all I do and along with my mom is my biggest cheerleader. I admire him everyday for being strong and dealing with Alpha, for trying to do his best to do what he use to. He will always be a hero to me, for everything he has taught me, the love he has shown me and for everything he does! Love you Daddy!!
November 12,2012
Here are some of the treatments for Alpha-1:
Augmentation therapy consists of intravenous infusions, usually weekly, of alpha-1 antitrypsin protein purified from healthy plasma donors. The goal is to increase the level of alpha-1 protein in the blood and lungs in order to slow or stop the progression of Alpha-1 lung disease.
Augmentation therapy has been shown to increase blood and lung levels of alpha-1 antitrypsin protein, reduce the rate of decline of lung function, and improve survival. Augmentation therapy cannot restore lost lung function and is not considered a cure. However, this therapy is currently the standard of care for Alphas with COPD.Augmentation therapy also appears to be an effective treatment for the Alpha-1 related skin disease Necrotizing Panniculitis.Augmentation therapy is not a treatment for Alpha-1 liver disease.
Drug Therapy
Alphas with lung diseases such as asthma, COPD or bronchiectasis can be helped by the same drugs used by non-Alphas for these conditions.These include drugs to open up the lung passages (bronchodilators) and reduce the chronic inflammation that is common in the lungs of Alphas (corticosteroids).
Surgical Options
Lung/liver transplantation can a viable option for some patients. As experience with new surgical techniques increases (particularly single-lung transplantation), lung transplantation may become more attractive to patients with Alpha-1 with end-stage lung disease. Also, living-related liver transplantation is an option at some transplant facilities. Transplantation is only for patients with end-stage lung or liver disease, which means that they are resistant to more conservative therapies (such as treating symptoms or augmentation therapy). Patients must have extensive damage in the lungs or liver to warrant this surgical option.
November 13,2012
The Upcoming holidays always give me a chance to focus on my family and be thankful for the memories we are always creating together. I look especially forward to this time this year because of me being away at school! I look forward to thanksgiving, sitting at the table with 30 some people from my family, thanking god for everything I have in my life and the love I am constantly surrounded with. I am so thankful for all I have. I am truly blessed to have all these amazing people in my life, family, friends, and so many other important people in my life.
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