m*********7
发帖数: 5207 | 1 Special needs include, but not limited to:
Blindness (all degrees of vision impairment), Deafness (all degrees of
hearing impairment), Down Syndrome, preterm birth, cerebral parsy, learning
disability, speech delay, motor delay, neuro-muscular disorders such as
muscular atrophy, Autism Spectrum Disorder, Attention Deficit Disorder,
Global Developmental Delay, Apraxia, Dyscalulia, Dysgraphia, Dylexia，
Central Auditory Processing Disorder, Sensory Processing Disorder，Childhood
Disintegrative Disor... 阅读全帖 |
|
m*********7
发帖数: 5207 | 2 "平均100个孩子里有5个special need, 我觉得比较合理。"
-- 你知道在流行病学上，所有如下疾病的儿童加起来，占儿童总数的百分比么？你能
证明5%是个合理的估算么？
Blindness (all degrees of vision impairment), Deafness (all degrees of
hearing impairment), Down Syndrome, preterm birth, cerebral parsy, learning
disability, speech delay, motor delay, neuro-muscular disorders such as
muscular atrophy, Autism Spectrum Disorder, Attention Deficit Disorder (ADD/
ADHD), Obsessive compulsive disorder (OCD), Global Developmental Delay,
Apraxia, Dyscalulia, Dysgraphia, Dylexia，... 阅读全帖 |
|
t*****3
发帖数: 586 | 3 怀孕刚生完孩子，来美时间也很短
今收到一个帐单是genzyme的有关516 spinal muscular atrophy测试，一共875usd，上
面说我的保险公司denied because this care may be covered by another payer per
coordination of benefits
我保险公司是empire blue across。我来美时间不长，我是学校统一买的保险，大家好
像生时候都没有这么大支出
我现在是该给保险公司电话吗？告诉它，我没其他保险，让它cover？要是拒绝呢？ |
|
t****u
发帖数: 836 | 4 What It Is:
EPA (eicosapentaenoic acid) and DHA (docosahexaenoic acid) are two principal
fatty acids found in fish and krill. They belong to a family of nutrients
known as omega-3 fatty acids. DHA can also be obtained from other marine
sources, such as algae (algal oil). EPA and DHA are polyunsaturated fats ("
good" fats, as opposed to saturated fats which are thought to increase the
risk of heart disease). The body can only manufacture limited amounts of EPA
and DHA from the essential fatty aci... 阅读全帖 |
|
r********e
发帖数: 251 | 5 SCA 5 violates the 4th Amendment of the US constitution, violates the
Contract Clause, is against the rulings of Supreme Court decision, against
all the conscience of hard-working people here in Californi and the US,
defeats the very cause people like martin Luther King fought for. SCA 5 uses
the very evil – the majority vote – to deprive the interest of monority
groups. If one majority group can do this against other minority group on
the education issue, What happens to property? what happens ... 阅读全帖 |
|
l**********r
发帖数: 1745 | 6 嗯，我第一次见ob时被要求做的血检的账单，血检charge了好多项，其他少点的就算了
，这可是第8周的，貌似与搪塞无关的检测，说说这贵的几项的账单吧：
1. fragile X carrier screen, charges $669, 我要pay的 $334.50
2. cystic fibrosis 97, charges $525，我要pay的 $262.50
3. spinal muscular atrophy, charges $1050, 我要pay的 $525.00
这三项贵的加起来一共我要pay $1122.00.
请问大家怀孕是的第一次血检账单上也是这些项目么？是必须做的么？
我没有经验，第一次去见ob，ob叫去隔壁的那个lab验血，就去了……然后也不知道做
了什么，然后就是收到我要交的1300多的账单，上面是最贵的三项测试。
我想彻底整明白了，所以问问大家……
不好意思，这一向老来烦大家……谢谢了！ |
|
l**********r
发帖数: 1745 | 7 嗯，我第一次见ob时被要求做的血检的账单，血检charge了好多项，其他少点的就算了
，这可是第8周的，貌似与搪塞无关的检测，说说这贵的几项的账单吧：
1. fragile X carrier screen, charges $669, 我要pay的 $334.50
2. cystic fibrosis 97, charges $525，我要pay的 $262.50
3. spinal muscular atrophy, charges $1050, 我要pay的 $525.00
这三项贵的加起来一共我要pay $1122.00.
请问大家怀孕是的第一次血检账单上也是这些项目么？是必须做的么？
我没有经验，第一次去见ob，ob叫去隔壁的那个lab验血，就去了……然后也不知道做
了什么，然后就是收到我要交的1300多的账单，上面是最贵的三项测试。
我想彻底整明白了，所以问问大家……
不好意思，这一向老来烦大家……谢谢了！ |
|
a********a
发帖数: 3176 | 8 以下是帮着改了的英文， 如果可能，请让这个妈妈用它更新下网站。希望有所帮助。
My name is Yan Chen,from Shenzhen China. My daughter Jianing He, my only
child, is suffering from bilateral retinoblastomas.
On July 1, 2013, when she was 17 months old, we noticed a white pupil in her
left eye. After a series of eye exams, the doctor made a diagnosis:
bilateral retinoblastomas, and her situation was very grave. To save her
from blindness and death, we parents tried our best to give her immediate
treatment, but unfortunately, after four ses... 阅读全帖 |
|
a********a
发帖数: 3176 | 9 以下是帮着改了的英文， 如果可能，请让这个妈妈用它更新下网站。希望有所帮助。
My name is Yan Chen,from Shenzhen China. My daughter Jianing He, my only
child, is suffering from bilateral retinoblastomas.
On July 1, 2013, when she was 17 months old, we noticed a white pupil in her
left eye. After a series of eye exams, the doctor made a diagnosis:
bilateral retinoblastomas, and her situation was very grave. To save her
from blindness and death, we parents tried our best to give her immediate
treatment, but unfortunately, after four ses... 阅读全帖 |
|
a*****r
发帖数: 54 | 10 前景好像不是很乐观，从Project Cure Spinal Muscular Atrophy网页上可以了解到（http://www.projectcuresma.org/criteria.asp），只有Carni-Val Type 1接受两周到9个月的病人进行测试（符合你表姐孩子的情况）。但是由于患者身体的问题，不适宜长距离的旅行，所有要求就近就医。现在这个program一共有9个合作地点，除了一个在德国，一个在阿根廷，其余都在美国...
preclinical |
|
h****r
发帖数: 2056 | 11 Even though he is a Democrat (and a scumbag) John Edwards was absolutely
right when he ran for President in 2004 and talked about two Americas. There
is a group of people who have assets --- not just financial (education, job
security, political connections, family/friends with connections, self-
discipline, strong work ethic) --- that allow them to weather difficult
times, get second/third/fourth chances if they fail, etc. Then there is
another class of Americans who are living paycheck to payc... 阅读全帖 |
|
r******8
发帖数: 926 | 12 SCA 5 violates the 4th Amendment of the US constitution, violates the
Contract Clause, is against the rulings of Supreme Court decision, against
all the conscience of hard-working people here in Californi and the US,
defeats the very cause people like martin Luther King fought for. SCA 5 uses
the very evil – the majority vote – to deprive the interest of monority
groups. If one majority group can do this against other minority group on
the education issue, What happens to property? what happens ... 阅读全帖 |
|
T******g
发帖数: 21328 | 13 他们是没有良知和理念的，一切为党派利益为大，利用华裔的面孔欺骗华人
http://calwatchdog.com/2013/07/12/sca-5-would-repeal-much-of-pr
James says: February 23, 2014 at 2:22 pm SCA 5 violates the 4th Amendment of
the US constitution, violates the Contract Clause, is against the rulings
of Supreme Court decision, against all the conscience of hard-working people
here in Californi and the US, defeats the very cause people like martin
Luther King fought for. SCA 5 uses the very evil – the majority vote – to
deprive the interest of mono... 阅读全帖 |
|
H****0
发帖数: 238 | 14 【 以下文字转载自 NextGeneration 讨论区 】
发信人: aprilxu (妞妞是个乖宝宝), 信区: NextGeneration
标 题: [bssd]我的孩子，我的经历
发信站: BBS 未名空间站 (Fri Mar 30 00:33:44 2012, 美东)
我已经很久很久不发帖了，自从我女儿确诊以后，我就再没有心思在网上发帖和回帖了
。这几天看了一些关于残疾孩子和流产的帖子，我忍不住想说几句我自己的经历，也算
是一种倾诉吧。
我女儿快三岁了，又漂亮又聪明，可是，她不会走路，而且永远也不会。她患有SMA (
Spinal Muscular Atrophy) 。这是一种genetic disorder，由于基因缺失身体无
法制造一种蛋白，严重影响她的运动神经元和所控制的肌肉，导致肌张力低下。SMA是
一种罕见病，发病率仅为万分之一，由于我和我老公都是携带者（我们都不知道，也没
有家族史），我们的孩子有四分之一的几率患病，我的女儿很不幸。
但是幸运的是，我的女儿不是最严重的情况。Type 1，也就是最严重的情况，孩子一般
不会活过两岁。我女儿属于type 2，医生没... 阅读全帖 |
|
n******a
发帖数: 114 | 15 今天收到Premera的信，说老婆怀孕时做的genetic tests是invesigational的，一分钱
不给报，自己要出上千！
我们当时那个counselor说combined screening老婆做几十，我做3，4百。咋就变成这
么多了，难道年中改了什么政策吗？
一共做了12个，我列一下bloom syndrome, canavan disease, cystic fibrosis,
familial dysautonomia, fanconi anemia type c, fragile x syndrome, gaucher
disease, hb beta chain-related hemoglobinopathy, hexosaminidase a deficiency
, mucolipidosis V, niemann-pick disease, spinal muscular atrophy
有没有同样做过的兄弟姐妹，帮忙看看你们的Test report，是不是也是这么多测试和
全部是自己付啊？ |
|
e********g
发帖数: 2524 | 16 昨天在youtube上看了半天。
首先觅食的方法就很特别了，跟我们钓鱼一样
更神奇的是，公鱼的大小大概只有母鱼的1/40,他们从出生开始唯一目的就是找母鱼，
咬她一口，然
后释放一种酶消化掉公鱼的嘴巴和母鱼的皮肤，最后把自己的血管跟母鱼的血管pair起
来，慢慢失去
眼睛，大脑心脏等等，成为母鱼身上的一个器官，作用是排放精子。
wiki上对于male的一段描述:
At birth, male ceratioids are already equipped with extremely well
developed olfactory organs that detect scents in the water. The male
ceratioid lives solely to find and mate with a female. They are
significantly smaller than a female angler fish, and may have trouble
finding food in the deep sea. Furthermore, the ... 阅读全帖 |
|
l******l
发帖数: 2679 | 17 肌浆里面确实含有不少水分，因为一个肌糖原是以和三个水分子结合的方式存在的。
但肌肉的体积也确实是由肌浆和肌纤维组成的，而且肌浆占大头。肌肉训练时，
即增加肌细胞储存肌浆的能力又同时使肌纤维粗大，两者相加，肌肉的体积就
增加了。
为什么bodybuilder的肌肉比专业举重运动员大，但后者力量却比前者大呢？
主要因为bodybuilder的训练饮食更容易提高肌细胞储存肌浆的能力，而举重
运动员的训练偏重于CNS和对肌纤维的刺激。
当停止训练一段时间后，肌细胞储存肌浆的能力和肌纤维都会衰退，从而导致
肌肉的atrophy。 |
|
F*****r
发帖数: 571 | 18 Male muscle loss is a common symptom of andropause and it manifests itself
in the loss of muscle strength and overall muscle mass. Age related muscle
loss, or sarcopenia can start as early as 20 or 25
Muscles will naturally experience atrophy if the body is largely inactive;
if you don't use the muscles, you will likely lose them. Every year between
the ages of 25 and 60, the physically inactive male will lose muscle mass
and muscle strength at a rate of .5% and although this number may seem low... 阅读全帖 |
|
g*2
发帖数: 658 | 19 如果有这些问题，应该要重视。
The following findings may be noted during the examination:
Hip flexion, rotation, or abduction weakness is present with many lower
extremity injuries, particularly those affecting the hip or knee.
Increased lumbar lordosis suggests weak anterior core muscles, a common
condition in runners with hip weakness.
Vastus medialis atrophy or asymmetry can occur with patellofemoral pain
syndrome (PFPS), or in athletes who have had knee surgery.
Tenderness along the medial ... 阅读全帖 |
|
g*2
发帖数: 658 | 20 这个要慎入。有问题，查个关键词，看看。
SPECIFIC INJURIES
Hip injuries
Overview and approach — Hip injuries are less common in runners than
injuries to the lower extremity and they can be difficult to diagnose.
Nevertheless, during jogging, the hip joint is subjected to loads up to
eight times body weight and both acute and chronic injuries can occur [55].
In runners, the differential diagnosis of hip pain includes gluteus medius
tendinopathy, piriformis syndrome, stress fracture of the femoral neck,
labral tear, a... 阅读全帖 |
|
l*******o
发帖数: 12469 | 21 from MARCA
The child, who admired the keeper, had died of a serious illness
Casillas wasn't in the best of moods for the game against Manchester City.
Just a few hours before the game, he heard about the death of a Polish boy,
Dawid Zapisek, who he met during the recent European Championships.
Aged 14, he achieved his dream of meeting Iker in person. Suffering from
Spinal Muscular Atrophy, the boy's room was plastered with pictures of the
Spanish keeper.
As the kid said himself, he managed to do... 阅读全帖 |
|
d**y
发帖数: 18174 | 22 根据google translate
资深萎缩男 = Senior male atrophy |
|
b*s
发帖数: 82482 | 23 居然找到了：
这个Surowiecki老是写经济专栏的……
http://www.newyorker.com/arts/critics/books/2010/10/11/101011cr
Later
What does procrastination tell us about ourselves?
by James Surowiecki October 11, 2010
Procrastination interests philosophers because of its underlying
irrationality.
Some years ago, the economist George Akerlof found himself faced with a
simple task: mailing a box of clothes from India, where he was living, to
the United States. The clothes belonged to his friend and colleague Joseph
Stiglitz, w... 阅读全帖 |
|
m*********7
发帖数: 5207 | 24 我是最近这些坑的当事人之一，我来给大家节省点时间吧。
这次争论的核心，是special education和general education应不应该得到现有教育资
源的问题。special education主要指对special need children进行的教育和扶持。
Special needs include, but not limit to:
Blindness (all degrees of vision impairment), Deafness (all degrees of
hearing impairment), Down Syndrome, preterm birth, cerebral parsy, learning
disability, speech delay, motor delay, neuro-muscular disorders such as
muscular atrophy, Autism Spectrum Disorder, Attention Deficit Disorder (ADD/
ADHD), Obsessive compul... 阅读全帖 |
|
C*****h
发帖数: 926 | 25 Small oilgos 还是可以直接进入细胞的，并且可能用来治病。
下面是两篇Nature文章，很有前途的。
（说明一下，这个纯粹学术交流，与方舟子打假无关。）
Peripheral SMN restoration is essential for long-term rescue of a severe
spinal muscular atrophy mouse model
Yimin Hua et al., 2011. Nature (478) 123-126
Pathogenic exon-trapping by SVA retrotransposon and rescue in Fukuyama
muscular dystrophy
Mariko Taniguchi-Ikeda et al., 2011. Nature (478) 127-131 |
|
A*****c
发帖数: 36 | 26 感谢neurotrophin的翻译！
————————————————————————
发信人: neurotrophin (NGF), 信区: WaterWorld
标 题: “朱令家人寻求呼吸科专家帮助”的英文翻译 - 请发给你认识的专家
发信站: BBS 未名空间站 (Thu May 2 23:29:20 2013, 美东)
翻译来了。请帮忙转华人。
Zhu Ling, the victim of a thallium poisoning case in China 19 years ago, is
badly suffering from the residual effect. The diaphragmatic paralysis,
severe atrophy of her right lung, and the weak respiratory function present
the biggest threat to her. Tracheostomy was conducted and suction device is
being used. Dr. ... 阅读全帖 |
|
n**********n
发帖数: 532 | 27 翻译来了。请帮忙转华人。
Zhu Ling, the victim of a thallium poisoning case in China 19 years ago, is
badly suffering from the residual effect. The diaphragmatic paralysis,
severe atrophy of her right lung, and the weak respiratory function present
the biggest threat to her. Tracheostomy was conducted and suction device is
being used. Dr. John Adis, a former U.S. Embassy doctor who visited Zhu
Ling and reviewed her chest x-ray before, also pointed out that the lung
problem presents the biggest threat to h... 阅读全帖 |
|
n**********n
发帖数: 532 | 28 翻译来了。请帮忙转华人。
Zhu Ling, the victim of a thallium poisoning case in China 19 years ago, is
badly suffering from the residual effect. The diaphragmatic paralysis,
severe atrophy of her right lung, and the weak respiratory function present
the biggest threat to her. Tracheostomy was conducted and suction device is
being used. Dr. John Adis, a former U.S. Embassy doctor who visited Zhu
Ling and reviewed her chest x-ray before, also pointed out that the lung
problem presents the biggest threat to h... 阅读全帖 |
|
H****y
发帖数: 2992 | 29
And this is weirrrrrrrrrrrrd! (I didn't know it before, thanks for sharing.)
---
The “missing” males had been there all along, just unrecognized and
misclassified, and Regan and other scientists, like Norwegian zoologist
Albert Eide Parr, soon figured out why the male ceratioids looked so
different. They don’t need lures or big mouths and teeth because they don’
t hunt, and they don’t hunt because they have the females. The ceratioid
male, Regan wrote, is “merely an appendage of the female, and... 阅读全帖 |
|
c**i
发帖数: 6973 | 30 (1) You say, "现在在国内."
Sorry, there is NOTHING anybody can do, now that the patient--er, the dog--
is in China. Say what you may, but China is no place to treat human or
animal patients.
(2) Jack Daniel Terrier
http://en.wikipedia.org/wiki/Jack_Russell_Terrier
(Originating in the early 19th century from dogs bred and used by Reverend
John Russell, it has similar origins to the modern Fox terrier)
(3) Google with the term (Jack Daniel Terrier spine)--not quotation marks--
and you will find many ow... 阅读全帖 |
|
t*****u
发帖数: 8966 | 31 对了，周末看了视频。感觉似乎和咪宝不太一样。不过没看到外力碰触小花的反应。当
时咪宝还是能动的，就是非常的痛，所以我摸她后腿，尤其是关节，她还是会缩。小花
貌似右后腿完全没感觉了……
不知道现在如何。我没找到咪宝的全部用药记录，应该就是一般光谱抗生素。
把咪宝的诊断给你看看，等到专家看到她的时候，她已经几乎痊愈了，所以所谓的神经
专家没有发挥专业知识。前后看了N遍Vet，几次specialist
Presenting complaint: Waxing and waning fever, hind limb paresis
History: Meebo is a 13 week old female spayed Domestic shorthair cat that
presented to the Texas A&M emergency service for fever and hind limb paresis
. Meebo was adopted about a month ago from the shelter. On October 5, she
was taken ... 阅读全帖 |
|
b******a
发帖数: 12216 | 32 第三篇——Doggone DNA – inherited health problems in pets
(这篇太长了。。。我就把两个table里的内容copy过来了。如果有感兴趣的想要看，我
可以周一去单位scan一下这篇文，然后发上来)
Inherited Health Problems in Common Breeds
Most popular dog breeds
Labrador retriever: Degenerative joint diseases; eye problems that cause
blindness; extreme muscle weakness after intense exercise or excitement.
German shepherd: Degenerative joint diseases; temperament issues; eye
problems; heart conditions; a thyroid condition that can cause skin and
behavioral chages; dege... 阅读全帖 |
|
a*****t
发帖数: 332 | 33 你这个看人说话就想吐的病的学名叫spinocerebellar atrophy. 要治。 |
|
a*****t
发帖数: 332 | 34 cortex atrophy的太厉害，到处都是空地. |
|
|
l*****a
发帖数: 38403 | 36 说真格的对撒旦的说法犹太教要合理得多
It is very important to understand the difference between the Jewish
understanding of Satan and the Christian understanding of Satan.
First of all, in doing a quick search of the Hebrew and Christian bibles, we
find a remarkable difference. In the Jewish bible (Tanakh), we find three
separate references to Satan (the book of Job is considered one reference
because it is one continuous story). However, in the New Testament, a book 1
/3 the size of the Hebrew bible, we find 35 r... 阅读全帖 |
|
c****t
发帖数: 19049 | 37 THE GHASTLY ORDEAL OF TIMOTHY CAVENDISH
One bright dusk, four, five, no, my God, six summers ago, I strolled along a
Greenwich
avenue of mature chestnuts and mock oranges in a state of grace. Those
Regency residences
number among London’s costliest properties, but should you ever inherit one
, dear Reader, sell
it, don’t live in it. Houses like these secrete some dark sorcery that
transforms their owners into
fruitcakes. One such victim, an ex-chief of Rhodesian police, had, on the
evening in qu... 阅读全帖 |
|
c****g
发帖数: 3893 | 38 宗教不需要那么多脑, WS一点没事.
born
with atrophy in the hippocampus |
|
i*****t
发帖数: 24265 | 39 信仰耶和华是智慧的开端。
born
with atrophy in the hippocampus |
|
c****g
发帖数: 3893 | 40 有道理
born
with atrophy in the hippocampus |
|
l*******e
发帖数: 3584 | 41 有趣，如文中所讲压力可能是导致海马萎缩的原因
The authors offer the hypothesis that the greater hippocampal atrophy in
selected religious groups might be related to stress. They argue that some
individuals in the religious minority, or those who struggle with their
beliefs, experience higher levels of stress. This causes a release of stress
hormones that are known to depress the volume of the hippocampus over time.
This might also explain the fact that both non-
religious as well as some religious individuals have sma... 阅读全帖 |
|
p**********r
发帖数: 3581 | 42
born
with atrophy in the hippocampus
您要是自己打自己一闷棍，大脑绝不会萎缩。 |
|
h****9
发帖数: 1087 | 43 标题党。假设的结论是一些宗教活动也带来高压力，高压力是导致海马体萎缩的直接原
因。
born
with atrophy in the hippocampus |
|
|
p*****m
发帖数: 7030 | 45 你自己去看看他们的网站就知道了 从autism到ALS到alzheimer到parkinson 从mus
cular atrophy到eplepsy到心脏病到糖尿病 没有伊不能治的病 我相信你有常识能
判断 凡是包治百病无病不灵的 江湖郎中狗皮膏药的概率不是100%也差不了太多 这
个和干细胞到底能不能用来治病一点关系也没有。
最简单的 这世界上有小儿科医生外科医生内科医生精神科医生 没问题 可是来了个
老军医号称什么科都能看 你信么？
open
中。 |
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t****p
发帖数: 1504 | 47 三个讲座里有一个例子，我忘了哪个了，现在modeling的研究正在开展，发表的很少。
原文
spinal muscular atrophy也勉强算一个modeling的例子。他们发现iPS分化神经干细胞
的能力下降很多。
在 |
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o**d
发帖数: 3080 | 48 pubmed: Gong Zhang, Zoya Ignatova
1.Polyglutamine expansion alters the dynamics and molecular architecture of
aggregates in dentatorubropallidoluysian atrophy.
Hinz J, Lehnhardt L, Zakrzewski S, Zhang G, Ignatova Z.
J Biol Chem. 2012 Jan 13;287(3):2068-78. Epub 2011 Dec 1.
PMID:
22134925
[PubMed - in process]
2.Length-dependent translation of messenger RNA by ribosomes.
Valleriani A, Zhang G, Nagar A, Ignatova Z, Lipowsky R.
Phys Rev E Stat Nonlin Soft Matter Phys. 2011 Apr;83(4 Pt 1):04... 阅读全帖 |
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V***b
发帖数: 3419 | 49 比如SMA (Spinal Muscular Atrophy) 这种疾病是由于一个叫SMN1的隐性基因缺失引起
的，父母都没有病症但是都缺一个allele，结果孩子很不幸，25%的可能性发生了，
SMN1编码的蛋白SMN没有表达，这个蛋白是负责mRNA剪切的，对运动神经元的存活至关
重要，结果孩子终生不能走和运动，以后吃饭呼吸还会有困难。这种一个基因完全没有
的情况用病毒做载体感染可行吗？肯定有人试过了。主要的难关在哪里？转染效率低？
特定细胞表面没有受体？基因整合困难？ |
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