This foundation
raises money and awareness of a genetic disorder called Alpha Thalassemia. It also serves as a community for those with
the disorder. We cannot fight Alpha Thalassemia on our own. We need your help.
About Alpha Thalassemia:
Thalassemia is an autosomal recessive genetic disorder.
Thalassemia is a group of genetic disorders that cuts prodution
of hemoglobin in the blood. Hemoglobin brings oxygen to the blood,
and carbon dioxide to the lungs where it can be exhaled.
If hemoglobin is missing, it causes anemia (which in turn causes fatigue), and
occasionally death.
Hemoglobin has four protein
chains in it, two beta globin and four alpha globin. Hence the name of the two types of Thalassemia, alpha and beta. Each protein chain has two genes inside. There are two copies on
every humans chromosome 16. If the alpha genes are missing, alpha
thalassemia occurs. If beta genes are missing,beta
thalassemia occurs.
As with all disorders, Alpha Thalassemia has different severities.
-
The first severity is silent alpha thalassemia trait. This is caused by the
absence of one alpha gene. It causes no health problems, and can only be identified by genetic testing.
-
The second severity is the basic alpha thalassemia trait. It is caused by
the absence of two alpha genes. It usually causes no health problems, but sometimes anemia occurs. This can be
found using routine blood testing is the symptoms are not known.
-
The third severity is Hemoglobin H disease. It is caused by the absence of
three alpha genes. This causes moderate anemia but is not fatal.
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The fourth severity is Alpha Thalassemia major. There is a 25% chance of
passing this on to a child if the parents both have the basic alpha thalassemia trait. It is fairly rare, but in the
cases that it occurs, the infected infant most likely dies before birth or immediately afterwards.
Alpha Thalassemia most often occurs in people living in North Africa, Italy,
Greece, the Middle East, India, Vietnam, Laotia, Thailand, Singapore, Philippines, Cambodia, Malaysia,
Indonesia.
http://baguz.net/wp-content/uploads/2006/07/Autorecessive.png
Symptoms: Treatments:
Most of the types of Thalassemia
Since Alpha Thalassemia is a
cause anemia. The symptoms genetic disorder, it cannot be
for anemia include...
completely cured. However, many
--fatigue
scientists are working towards a
--rapid heart beat cure for all genetic disorders through
--shortness of breath
gene therapy. Research for gene
--headache
therapy is not far along and has not
--difficulty concentrating
been very successful. The most
--dizziness
common treatment is blood
--pale skin
transfusions. Blood transfusions
--leg cramps remove the affected blood and
--insomnia
replace it with normal blood.
However, since the body keeps
Our story:
producing affected blood, blood
The Haynes foundation of America
transfusions are needed every two to
was formed by myself, Annie Jones, three weeks. Blood transusions also
and my husband Patrick. We created create
a problem with iron overload.
this charity in honor of our stillborn
The body has no natural way to get
child. We hope to help others afflicted rid of the iron that is brought in by the
with this condition to live full lives,
blood transfusion, so iron chelation
to be able to be part of a community, therapy is needed. Basically, iron
and to help mourn the losses of children chelation
therapy is a drug (such as
just like our own. Alpha Thalassemia Exjade) used to remove excess iron
has been in my family for over four
from blood.
generations. I am afflicted with
the Alpha Thalassemia trait and my
How to help:
husband is as well. Previously in my
In order for gene therapy research
family, those affected by the disease
and testing to continue, funds are
have only married carriers of the disorder. needed.
The current goal of this
However, since both my husband and I foundation
is $3,000,000. If you
have the disorder, our child had a 25% don't
have money to spare, a great
chance of having Alpha Thalassemia way to help is to donate blood.
major. This turned out to be the case. People don't realize that this can save
We don't want to let others feel as alone many,
many lives. This is the primary
as we did after our child'd death, so we method
of treatment for all Alpha
have created this charity to help anyone Thalassemia
patients, and if blood
affected by this awful genetic disorder isn't available, then it can be fatal.
and their loved ones. Any help, even just a kind message,
is appreciated.
Red blood cells of a Alpha Thalassemia Major patient
