Today, I interviewed Dr. Sokol from Children's in Denver. He is the principal investigator of the Cholestatic Liver Disease Consortium (CLiC), and in our conversation, he mentioned that a longitudinal study of Alpha-1 children is in the process of being approved. When it is approved, he will be able to share more details about the study. Can I just say YAY? :)
In any case, Dr. Sokol made it clear that he encourages the parents of children with Alpha-1 to sign up via the Contact Registry on the CLiC web site:
http://rarediseasesnetwork.org/clic
Oh and Dr. Sokol said both children pre- and post-transplant are encouraged to be participants. He said a goal is to answer that never-ending question of why some children with Alpha-1 have severe liver disease and why the majority of the others don't. Wouldn't it be great if they could answer that question?
One last thing, this study is international because there is a research center located in London. So, UK families, you are invited too.
WOW, I'm pretty psyched about the interview, can ya tell? You should have seen me before it though. I was a bundle of nerves. I'm not really sure why except that this means so incredibly much to me. Alpha-1 needs a cure now. My childrens' lives depend it as well as all of our Alpha friends. Long live the Alphas!
I signed Grace & Meghan up for the registry last year. Thank God for researchers like Dr. Sokol. I only hope more researchers are inspired by his great example.
Jen, the incredibly impressed parent of 2 Alphas
Sunday, February 25, 2007
What a big girl!
Yesterday was Meghan's first entire day of wearing regular underwear. So, she is officially potty trained now. WOOHOO
Where has the time gone? To me, it seems like yesterday since she looked like this:
She is really quite proud of herself, and well, we are proud of her too. She has come a long, long way since being born 1 pound, 9.5 ounces. Way to grow up Meghan.
Where has the time gone? To me, it seems like yesterday since she looked like this:
She is really quite proud of herself, and well, we are proud of her too. She has come a long, long way since being born 1 pound, 9.5 ounces. Way to grow up Meghan.
Saturday, February 24, 2007
Ginormous
I thought I'd share a little of the childhood logic that appears at random times in our household. Before I tell you, know that Grace and Meghan are at ages where they have noticed differences between people. They know that ladies have boobies, but men still have nipples too. Here is a little of our conversation today:
Meghan pulls her shirt away from her neck and peers down into her shirt, and says "I have boobies."
Grace: "Me too. I have boobies. Mommy has big boobies."
Me: "Thanks Gracie, but I don't have big boobies."
Meghan: "I have big boobies!"
Grace: "No, you don't! God has ginormous boobies!"
Me: "What? Oh! (Laughter as I realize that Grace thinks God is a huge entity.) "Gracie, is God a man or a lady?"
Grace: "A man!"
Meghan: "I have boobies!"
Me: "Yes, you both have boobies."
Meghan pulls her shirt away from her neck and peers down into her shirt, and says "I have boobies."
Grace: "Me too. I have boobies. Mommy has big boobies."
Me: "Thanks Gracie, but I don't have big boobies."
Meghan: "I have big boobies!"
Grace: "No, you don't! God has ginormous boobies!"
Me: "What? Oh! (Laughter as I realize that Grace thinks God is a huge entity.) "Gracie, is God a man or a lady?"
Grace: "A man!"
Meghan: "I have boobies!"
Me: "Yes, you both have boobies."
Thursday, February 15, 2007
Poster Child for Preeclampsia
Cross posting an entry that I wrote on the Preeclampisa Survivors blog:
http://preeclampsiasurvivors.blogspot.com/2007/02/ever-feel-like-poster-child-for.html
http://preeclampsiasurvivors.blogspot.com/2007/02/ever-feel-like-poster-child-for.html
Sunday, February 11, 2007
Neurodevelopmental Issues in Preemies
Hmmm...should I be glad about this post? Should I be sad?
Well, I'm just confused as of yet. I think I'll reread this one several times before I can completely digest it. In any case, having had 2 premature daughters, I want to know what I'm facing as they get older.
http://talesfromthewomb.blogspot.com/2007/02/neurodevelopmental-devastation-how-can.html
Well, I'm just confused as of yet. I think I'll reread this one several times before I can completely digest it. In any case, having had 2 premature daughters, I want to know what I'm facing as they get older.
http://talesfromthewomb.blogspot.com/2007/02/neurodevelopmental-devastation-how-can.html
Monday, February 05, 2007
Great, just great...
High Blood Pressure in Pregnancy Boosts Lifetime Heart Risk
It's linked to hardening of the arteries in later life, study finds
By Ed Edelson
HealthDay Reporter
MONDAY, Feb. 5 (HealthDay News) -- High blood pressure during pregnancy is a warning sign of diabetes and heart disease later in life, a Dutch study indicates.
The study of 491 older, postmenopausal women found that those who had reported high blood pressure during a pregnancy had a 57 percent higher risk of developing calcium buildup in their arteries, compared with those whose blood pressure did not rise abnormally during pregnancy.
The findings were published online in the Feb. 5 issue of the journal Hypertension.
Calcification of the arteries is a marker of atherosclerosis or "hardening of the arteries," which is associated with an increased risk of cardiovascular disease.
"Our research and that of others may have important implications for the management of women who have high blood pressure in pregnancy," senior researcher Dr. Michiel L. Bots, associate professor of epidemiology at the Julius Center for Health Sciences and Primary Care in Utrecht, said in a statement.
The findings probably do not have implications for obstetric care, added Dr. Sharonne Hayes, director of the women's heart clinic at the Mayo Clinic in Rochester, Minn.
"We would still need to treat those women the same way as we now do during pregnancy," she said. "But now, those women have been marked as having an increased risk of heart disease. They have another marker of risk and need to be much more vigilant in looking for cardiovascular disease."
Previous studies have led to "a growing recognition that complications, and particularly cardiovascular complications, during pregnancy lead to an increased risk of heart disease later on," said Hayes, who is chair of the scientific advisory board of Women Heart: A National Coalition for Women With Heart Disease.
"As far as I know, this is the first to look at coronary calcification, which is a very good marker for the presence of cardiovascular disease," she said.
The U.S. National Heart, Lung and Blood Institute estimates that 6 percent to 8 percent of American women develop unusually high blood pressure during pregnancy. Some go on to develop a condition called preeclampsia, which can damage the placenta, kidney, liver and brain. A more serious condition, called eclampsia, is a leading cause of pregnancy-related mortality.
The increase in calcification in the Dutch study was seen not only in women who developed preeclampsia but also those with high blood pressure, Hayes noted.
"It is a sign that you need to be more careful about your risk of heart disease down the road," she said.
The women themselves and their physicians should be aware of their increased risk, said Dr. Daniel Jones, dean of the University of Mississippi School of Medicine and president-elect of the American Heart Association.
"In women who have had hypertension during pregnancy, there needs to be careful monitoring of cardiovascular risk factors, to [help them] be prepared appropriately to manage those factors," Jones said. "These women should be doing what we all should be doing -- keeping their weight in a good range, exercising, not smoking, eating a diet high in fresh fruits and vegetables."
The study, he said, "is a new way of looking at an issue that we have long suspected is a problem: that women who have hypertension in pregnancy are more likely to develop hypertension later in life, and hypertension is a known risk of vascular disease."
SOURCES: Sharonne Hayes, M.D., director, Mayo Clinic Women's Heart Clinic, Rochester, Minn; Daniel Jones, M.D, dean, University of Mississippi School of Medicine, Jackson, and president-elect, American Heart Association; Feb. 6, 2007, Hypertension
Copyright © 2007 ScoutNews, LLC. All rights reserved.
It's linked to hardening of the arteries in later life, study finds
By Ed Edelson
HealthDay Reporter
MONDAY, Feb. 5 (HealthDay News) -- High blood pressure during pregnancy is a warning sign of diabetes and heart disease later in life, a Dutch study indicates.
The study of 491 older, postmenopausal women found that those who had reported high blood pressure during a pregnancy had a 57 percent higher risk of developing calcium buildup in their arteries, compared with those whose blood pressure did not rise abnormally during pregnancy.
The findings were published online in the Feb. 5 issue of the journal Hypertension.
Calcification of the arteries is a marker of atherosclerosis or "hardening of the arteries," which is associated with an increased risk of cardiovascular disease.
"Our research and that of others may have important implications for the management of women who have high blood pressure in pregnancy," senior researcher Dr. Michiel L. Bots, associate professor of epidemiology at the Julius Center for Health Sciences and Primary Care in Utrecht, said in a statement.
The findings probably do not have implications for obstetric care, added Dr. Sharonne Hayes, director of the women's heart clinic at the Mayo Clinic in Rochester, Minn.
"We would still need to treat those women the same way as we now do during pregnancy," she said. "But now, those women have been marked as having an increased risk of heart disease. They have another marker of risk and need to be much more vigilant in looking for cardiovascular disease."
Previous studies have led to "a growing recognition that complications, and particularly cardiovascular complications, during pregnancy lead to an increased risk of heart disease later on," said Hayes, who is chair of the scientific advisory board of Women Heart: A National Coalition for Women With Heart Disease.
"As far as I know, this is the first to look at coronary calcification, which is a very good marker for the presence of cardiovascular disease," she said.
The U.S. National Heart, Lung and Blood Institute estimates that 6 percent to 8 percent of American women develop unusually high blood pressure during pregnancy. Some go on to develop a condition called preeclampsia, which can damage the placenta, kidney, liver and brain. A more serious condition, called eclampsia, is a leading cause of pregnancy-related mortality.
The increase in calcification in the Dutch study was seen not only in women who developed preeclampsia but also those with high blood pressure, Hayes noted.
"It is a sign that you need to be more careful about your risk of heart disease down the road," she said.
The women themselves and their physicians should be aware of their increased risk, said Dr. Daniel Jones, dean of the University of Mississippi School of Medicine and president-elect of the American Heart Association.
"In women who have had hypertension during pregnancy, there needs to be careful monitoring of cardiovascular risk factors, to [help them] be prepared appropriately to manage those factors," Jones said. "These women should be doing what we all should be doing -- keeping their weight in a good range, exercising, not smoking, eating a diet high in fresh fruits and vegetables."
The study, he said, "is a new way of looking at an issue that we have long suspected is a problem: that women who have hypertension in pregnancy are more likely to develop hypertension later in life, and hypertension is a known risk of vascular disease."
SOURCES: Sharonne Hayes, M.D., director, Mayo Clinic Women's Heart Clinic, Rochester, Minn; Daniel Jones, M.D, dean, University of Mississippi School of Medicine, Jackson, and president-elect, American Heart Association; Feb. 6, 2007, Hypertension
Copyright © 2007 ScoutNews, LLC. All rights reserved.
Latest Developments
Quick update on me:
Last week, I came down with a nasty upper respiratory virus. This weekend, I felt like my nose was a faucet.
Now, it has settled into my left lung again. This is getting so old.
I think I’ll be making an appointment with my doctor again. I’m short of breath again, and frustrated with what feels like a repeat of my lung infection in December.
In other news:
I’m still investigating sensory processing disorder in how it relates to Gracie. I’ll post more soon, but wow, this seems to be the light at the end of the tunnel finally.
Darn preeclampsia! Darn premature birth! Darn my body and what it did to both of my Alpha Girls!
Terse Jen
Last week, I came down with a nasty upper respiratory virus. This weekend, I felt like my nose was a faucet.
Now, it has settled into my left lung again. This is getting so old.
I think I’ll be making an appointment with my doctor again. I’m short of breath again, and frustrated with what feels like a repeat of my lung infection in December.
In other news:
I’m still investigating sensory processing disorder in how it relates to Gracie. I’ll post more soon, but wow, this seems to be the light at the end of the tunnel finally.
Darn preeclampsia! Darn premature birth! Darn my body and what it did to both of my Alpha Girls!
Terse Jen
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