08-22-2007, 07:26 PM
Going to make a speech...so bear with me,
Kind of an emotional topic but I wanted to help spread the word, I hope you bear with me.
This is my daughter...Livy http://farm2.static.flickr.com/1363/955 ... aae8_b.jpg
She's three now. Three years ago we spent 24 hours in the er shortly after her birth because she failed a state mandated screening for CAH.
My daughter has CAH or Congenital Adrenal Hyperplasia. It is an endocrine problem that affects the adrenal glands. It can cause the sudden onset of death in newborns as well as a host of other severe endocrine problems for older kids, including early onset of puberty and growth problems.
She was screened at birth and caught early, but she will have to have hormone replacement for the rest of her life. The good news is that she will be fine, she was caught early.
Pennsylvania's screening standards were raised between the birth of my son and my daughter, so it wasn't caught in my son's case, and he is lucky to be here. In fact, if Livy hadn't been caught, we would have never thought to have my son tested.
My son entered puberty at age six and he is now facing a lifetime of struggles and health problems. There are medicines, but they are expensive. My son's medication costs more than 3000 dollars a month. We have won the battle with our insurance carrier and my son will be fine in the long run, but many families are not so lucky.
If you have a moment, go check out the cah.org website here: http://www.congenitaladrenalhyperplasia.org/
And the support groups here: http://www.savebabies.org/diseasedescriptions/cah.php
and here: http://www.every1cares.org/
There are many ways to help, including helping families who have no insurance, so consider a donation, but mostly we need the state and local gov'ts to raise screening standards. Early detection is the best method of addressing the problem. Perfectly healthy babies go home from the hospital only to die and they don't have to.
If you are going to have a kid soon, and your state does not require a CAH screening at birth, REQUEST IT.
Just thought I'd share on all the forums I post at just to get the word out.
Thanks.
Travis Clark
Kind of an emotional topic but I wanted to help spread the word, I hope you bear with me.
This is my daughter...Livy http://farm2.static.flickr.com/1363/955 ... aae8_b.jpg
She's three now. Three years ago we spent 24 hours in the er shortly after her birth because she failed a state mandated screening for CAH.
My daughter has CAH or Congenital Adrenal Hyperplasia. It is an endocrine problem that affects the adrenal glands. It can cause the sudden onset of death in newborns as well as a host of other severe endocrine problems for older kids, including early onset of puberty and growth problems.
She was screened at birth and caught early, but she will have to have hormone replacement for the rest of her life. The good news is that she will be fine, she was caught early.
Pennsylvania's screening standards were raised between the birth of my son and my daughter, so it wasn't caught in my son's case, and he is lucky to be here. In fact, if Livy hadn't been caught, we would have never thought to have my son tested.
My son entered puberty at age six and he is now facing a lifetime of struggles and health problems. There are medicines, but they are expensive. My son's medication costs more than 3000 dollars a month. We have won the battle with our insurance carrier and my son will be fine in the long run, but many families are not so lucky.
If you have a moment, go check out the cah.org website here: http://www.congenitaladrenalhyperplasia.org/
And the support groups here: http://www.savebabies.org/diseasedescriptions/cah.php
and here: http://www.every1cares.org/
There are many ways to help, including helping families who have no insurance, so consider a donation, but mostly we need the state and local gov'ts to raise screening standards. Early detection is the best method of addressing the problem. Perfectly healthy babies go home from the hospital only to die and they don't have to.
If you are going to have a kid soon, and your state does not require a CAH screening at birth, REQUEST IT.
Just thought I'd share on all the forums I post at just to get the word out.
Thanks.
Travis Clark
Theodoros of Smyrna (Byzantine name)
aka Travis Lee Clark (21st C. American name)
Moderator, RAT
Rules for RAT:
<a class="postlink" href="http://www.romanarmy.com/rat/viewtopic.php?Rules">http://www.romanarmy.com/rat/viewtopic.php?Rules for posting
Oh! and the Toledo helmet .... oh hell, forget it. :? <img src="{SMILIES_PATH}/icon_confused.gif" alt=":?" title="Confused" />:?
aka Travis Lee Clark (21st C. American name)
Moderator, RAT
Rules for RAT:
<a class="postlink" href="http://www.romanarmy.com/rat/viewtopic.php?Rules">http://www.romanarmy.com/rat/viewtopic.php?Rules for posting
Oh! and the Toledo helmet .... oh hell, forget it. :? <img src="{SMILIES_PATH}/icon_confused.gif" alt=":?" title="Confused" />:?
