One thing I have never blogged about before is that when Demi was an infant she was diagnosed with Thalassemia. I have never really posted anything on the blog regarding Thalassemia as we are lucky and it really doesn't affect Demi so it is not really on the forefront of my thoughts, but I think I should at mention it for the benefit of raising awareness in the few people that may read this blog regarding the more severe patients with this blood disease.
Thalassemia is a blood disease that originated in the Mediterranean Region which is where 50% of my family originated. There are two types of Thalassemia: Minor and Major and fortunately Demi only possesses the Minor type. This will virtually have no effect on her life whatsoever except for she will require some genetic counseling when she is old enough to think about having children on her own as 2 Thalassemic Minors make up a Major. Thalassemia is a genetic defect in which their is a reduced rate or no rate of synthesis in the globin chains that make up the hemoglobin, thus causing her to test anemic. Some symptoms of anemia include fatigue and we have taken into consideration that this may be why she is so sleepy.
Demi is a powerhouse sleeper. Most nights she goes to bed around 7 p.m. and I have to wake her up for school in the morning, otherwise on weekends she sleeps until 8:30 or 9 a.m. In talking with a lot of my "mommy friends" I realize that I am lucky as both of my children are that way. I can understand Daley's sleeping in since she is a night owl much like her Dad, but Demi goes to bed so early. There are a host of other symptoms though of which to our knowledge she has never experienced. Surely not pale skin....she appears to be dark like her Mommy. Surely no decrease in appetite....Demi is a little chubber and LOVES to eat, often times I am in awe of her ability!
May 1, 2011 was the 1st Annual Care Walk sponsored by the Cooley's Anemia Foundation and the Thalassemia Action Group. The closest one in our area was in Georgia, but there were several across the country. There is not much awareness regarding Thalassemia because it affects so few people in our region, but this is the greatest form of awareness we have come across so far and unfortunately I didn't know about it on May 1, 2011, but next year it will be April 29, 2012 and I may be calling on you to walk with me and help raise money to raise awareness as well as fund seeking treatment.
I have posted a few links below to reference that I found helpful and that you can go to if you are curious about learning more.
http://en.wikipedia.org/wiki/Thalassemia
http://www.thalassemia.org/
http://www.everydayhealth.com/health-center/thalassemia-symptoms.aspx
