As a parent, I enjoy hearing how my children are growing each time we go to the pediatrician for checkups. Except for Matthew's failing health early in life due to the Chiari Malformation, the experience has always been positive, they are getting taller and gaining weight.
I attended elementary school in a small town of about 350 people. The school housed all grades, Kindergarten through 12th. In the 4th grade we had medical evaluations to test our vision, hearing, motor skills, bone density, etc. I clearly remember them also doing a screening on each child for Scoliosis. I was sent home with a note saying I had a very mild case of this condition.
I have not really even thought about that "diagnosis" again until last year when I had a full physical. So I step on the scale, my weight loss journey continues... But then it was time to measure my height, I heard her say 5' even. I stepped down shaking my head and told her I am 5'2" so she agreed to check again, 5' even. I wanted to argue but had nothing but a WV driver's license to explain to this nurse that I have been 5'2" since high school.
Needless to say, I was stuck on that point but proceeded with the rest of the physical waiting for the Doctor to pause so that I could ask what this meant. He seemed shocked too, 2" is alot of difference. He checked my spine and knew immediately what has happened.
I have Scoliosis. Over the last several years I have slowly lost 2" in height. So, knowing the condition my son has, I started searching and sure enough there is a link between Scoliosis and Chiari.
Now, we know I have Scoliosis and we know that Matthew has a Chiari Malformation however it is still not known just how they are linked. So far, Matthew has not been diagnosed with Scoliosis. The exact cause of Chiari is still not known but there is a strong opinion that it is congenital. When Matthew was first diagnosed I asked the neurologist if it was wise/necessary to have myself, other family members and children scanned. Because I had become so familiar with the presenting symptoms of Chiari, I personally could rule all of us out, at least at the present time and the neurologist's opinion was to only test if the symptoms were there. However, discovering this link between Scoliosis and Chiari recently, I am again contemplating scans for the family. This information would be dual purposed, to ease my mind and to present the findings for further research to either support or refute the connection of these conditions to genetics.
Everyday I learn more about Matthew's condition. We have so much more research to do and we must press on to raise funding, awareness and education for this condition.
Tuesday, March 10, 2009
Please Pray for a Family Affected by Cancer
My heart is so heavy and I know the only answer lies with God, he is in control.
A friend of mine and her family are going through a very tough time right now. Her son is 13 and has had cancer for 10 years. They have been through all of the ups and downs and she has worked so hard to help her son fight this disease and all of the associated health problems. She has a belief in God that is unparalleled. Her son is at Hopkins now and it appears that there is nothing more they can do for him other than to make him comfortable.
Please keep her, her family and all of the families and children that must endure conditions such as cancer in your prayers. Pray for strength, hope and a cure.
Love Each Day, it truly is a gift.
A friend of mine and her family are going through a very tough time right now. Her son is 13 and has had cancer for 10 years. They have been through all of the ups and downs and she has worked so hard to help her son fight this disease and all of the associated health problems. She has a belief in God that is unparalleled. Her son is at Hopkins now and it appears that there is nothing more they can do for him other than to make him comfortable.
Please keep her, her family and all of the families and children that must endure conditions such as cancer in your prayers. Pray for strength, hope and a cure.
Love Each Day, it truly is a gift.
Monday, March 9, 2009
Link to Chiari in Fibromyalgia Patients
Don't always judge a book by its cover, open it up, study its contents...
In my research, I have found that Chiari patients are often misdiagnosed in so many ways, one way in particular is having a condition called Fibromyalgia. What is interesting is that in more recent findings, Fibromyalgia patients, in some cases, have varying Chiari malformations causing some or all of their symptoms. Studies are out showing symptoms of patients with Fibromyalgia and found to have Chiari as well improving with the typical surgery to treat Chiari Malformation, known as decompression surgery.
I see this as yet another tool to carry in our toolbox, knowledge is power.
http://www.co-cure.org/chiari.htm
In my research, I have found that Chiari patients are often misdiagnosed in so many ways, one way in particular is having a condition called Fibromyalgia. What is interesting is that in more recent findings, Fibromyalgia patients, in some cases, have varying Chiari malformations causing some or all of their symptoms. Studies are out showing symptoms of patients with Fibromyalgia and found to have Chiari as well improving with the typical surgery to treat Chiari Malformation, known as decompression surgery.
I see this as yet another tool to carry in our toolbox, knowledge is power.
http://www.co-cure.org/chiari.htm
Matthew's Story and My Mission...
Conquer Chiari is a national non-profit organization and has a wonderful all-encompassing mission when it comes to Chiari Malformations.
To further my work with Chiari awareness and education I am reaching further, I truly feel that the more people my family comes in contact with the larger impact we will have and what a great thing we can accomplish if we can help others shorten the time for a proper diagnosis, assist the medical community to recognize the condition through presenting symptoms and raise some money for research in the process.
On March 21st I will pursue another dream of mine which has an even greater meaning because of the great emphasis on my platform, I will compete for the title of Mrs West Virginia International 2009. I have been quite busy over the years having a combined total of 4 children and a busy professional life. I always knew I wanted to enter pageantry again but I wanted to be fully prepared. I wanted to be in the best shape I could be in physically and I also wanted to make sure I had the time to commit for both a state and national level competition. Well in October of 2008 I felt that I was there! I am a civil engineer with a Bachelor of Science degree from Texas A&M University and in October of 2007 I recieved my Professional Engineer's license for the state of West Virginia, what a wonderful feeling that was! So this competition was the next great thing to pursue!
So read the article below, it will give you a summary about my son's condition and more about the upcoming opportunity this month! Happy reading!
God Bless.
http://www.conquerchiari.org/subs%20only/Volume%207/Issue%207(1)/Angie%20Bowers%207(1).asp
To further my work with Chiari awareness and education I am reaching further, I truly feel that the more people my family comes in contact with the larger impact we will have and what a great thing we can accomplish if we can help others shorten the time for a proper diagnosis, assist the medical community to recognize the condition through presenting symptoms and raise some money for research in the process.
On March 21st I will pursue another dream of mine which has an even greater meaning because of the great emphasis on my platform, I will compete for the title of Mrs West Virginia International 2009. I have been quite busy over the years having a combined total of 4 children and a busy professional life. I always knew I wanted to enter pageantry again but I wanted to be fully prepared. I wanted to be in the best shape I could be in physically and I also wanted to make sure I had the time to commit for both a state and national level competition. Well in October of 2008 I felt that I was there! I am a civil engineer with a Bachelor of Science degree from Texas A&M University and in October of 2007 I recieved my Professional Engineer's license for the state of West Virginia, what a wonderful feeling that was! So this competition was the next great thing to pursue!
So read the article below, it will give you a summary about my son's condition and more about the upcoming opportunity this month! Happy reading!
God Bless.
http://www.conquerchiari.org/subs%20only/Volume%207/Issue%207(1)/Angie%20Bowers%207(1).asp
Saturday, March 7, 2009
Conquer Chiari Walk Across America - September 26, 2009
On September 26th of this year people from all walks of life will join together to raise awareness, educate their community and work to raise funding for Chiari research. This event will happen all across the country and the event planning is just getting underway for the first for the Eastern Panhandle of West Virginia. For this to be a successful event, we need sponsors and walkers alike!
More to come on this event!
March 26th - Chiari Awareness night at Chic-Fil-A
Matthew and I have worked with the PTO at Hedgesville Elementary School to organize a fundraiser to benefit Conquer Chiari. Notices will go out with all students on the Friday, March 20th. Anyone who says they are with Hedgesville Elementary School that evening when ordering will have 20% of their purchase donated to Conquer Chiari.
I have to say that our family has always enjoyed Chic-Fil-A's healthy choices and family atmosphere, for them to offer fundraising such as this is another testament to the value they add to our community.
So, if you find yourself wanting to get out that evening and have a great meal and help Conquer Chiari, just remember to let them know you are their for Hedgesville Elementary School. Thanks so much!
PS Substitute the fruit cup in place of the fries, healthy choice and the fruit is yummy!
I have to say that our family has always enjoyed Chic-Fil-A's healthy choices and family atmosphere, for them to offer fundraising such as this is another testament to the value they add to our community.
So, if you find yourself wanting to get out that evening and have a great meal and help Conquer Chiari, just remember to let them know you are their for Hedgesville Elementary School. Thanks so much!
PS Substitute the fruit cup in place of the fries, healthy choice and the fruit is yummy!
September 2009 - Chiari and Syringomyelia Awareness Month
We are thrilled that Governor Manchin has signed a proclamation naming the entire month of September as Chiari and Syringomyelia Awareness Month. The timing is perfect as I am working on the first Chiari Walk to be held in West Virginia in September. This event will take place in one day however our efforts will focus on the entire month of September for Awareness, Education and Research. I am currently talking with members of the West Virginia University Medical School - Neurology and Neurosurgery Departments in order to form a partnership for this event and many more to come.
I would like to thank the wonderful folks working in our state capitol who offered assistance in preparing the proclamation language and answering all of my questions along the way.
I would like to thank the wonderful folks working in our state capitol who offered assistance in preparing the proclamation language and answering all of my questions along the way.
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