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活動報導
2016 Global Awareness Day - 31 FACTs
2016 Global Awareness Day in May 的活動已全部結束。

其中針對TSC 31FACT 的說明,也都循著每日的進度一一釋放,現將全部的說明整體輸出,好讓更多的朋友了解"什麼是TSC?" 回顧這整個月的活動,看到我們團結不畏懼,蠻令人感動。這是一條長遠的陪伴道路,有大家相隨就不怕孤單!

05/01

TSC is a genetic disorder that causes tumors to form in vital organs, primarily the brain, eyes, heart, kidneys, liver, lung and skin. 

TSC是一種遺傳性疾病,會導致各個重要器官長出結節,主要在腦、眼、心、腎、肝、肺和皮膚。

05/02

TSC is caused by a mutation in either the TSC1 or TSC2 genes.
TSC是由於TSC1或TSC2基因突變而造成的。

05/03

Many babies with tuberous sclerosis complex (TSC) are now diagnosed before or soon after birth when rhabdomyomas (a type of heart tumor) are detected during routine ultrasounds.
許多TSC的新生兒目前可以在出生前或出生後不久被診斷出,是因為在進行例行性超音波時,心臟被檢測出有橫紋肌瘤(心臟結節的一種)。

05/04

Tuberous sclerosis complex (TSC) affects everyone differently, even identical twins. 
TSC影響每個患者的程度都不同,甚至是同卵雙胞胎。

05/05

Tuberous sclerosis complex (TSC) shows no gender bias and occurs in all races and ethnic groups.
TSC的表現並沒有性別的偏見(差異)會發生在所有種族(黃種人、白種人etc.)及各種族群。

05/06

More common than Lou Gehrig’s disease (ALS) or cystic fibrosis,tuberous sclerosis complex (TSC) is far less known.
相較於(盧葛雷克氏症)漸凍人、 囊性纖維囊腫,TSC較為普遍,但認識者卻遠少於前兩者。

05/07

Everolimus and rapamycin,which are used to treat some aspects of TSC were developed,thanks to scientists studying bacteria in the soil of Easter Island.

Everolimus and rapamycin 已被開發出來用在治療TSC某些症狀上,感謝科學家從復活島上土壤內的細菌研發出來。

05/08

The TAND Checklist is a screening tool to help identify TSC-Associated Neuropsychiatric Disorders (TAND). Every person with TSC should be screened for TAND at least once a year with the help of a doctor or nurse. The TAND Checklist is freely downloadable from the internet. 

TAND清單是一種篩選工具,可以幫助識別TSC相關的神經性精神障礙(TAND)。每個TSC患者每年至少有一次經由護士或醫生幫忙做TAND篩檢。TAND清單可以由網際網路自由下載。

05/09

A team approach to health care, with multiple specialists working together, can benefit people with tuberous sclerosis complex (TSC). Most people with TSC do not have access to this style of care.

一個醫療保健團隊,連結了許多專家一起合作嘉惠TSC病人。大多數的TSC病人並沒有進入這種保健體系。

05/10

At least half of people with tuberous sclerosis complex (TSC) have normal intellectual ability,but they may still experience difficulties with neurological manifestations that affect their daily life functioning. 
至少有一半的TSC患者具有正常智力,但在臨床上他們仍然經歷神經系統上的困難,並會影響他們的日常生活功能。

05/11

Tuberous sclerosis complex (TSC) affects more than 50,000 individuals in the United States,and many more caregivers, families and friends who live with the impact of the disease.

在美國有超過5萬個人受到TSC的影響,並且有更多的照料者,家庭和朋友在生活上受到這疾病的衝擊。

05/12

Yearly blood pressure checks and urine tests are recommended for people with TSC to monitor how well their kidneys are working.

對TSC的患者,每年的血壓檢測及尿檢是被建議的。目的要監控患者的腎臟功能是否運作正常。

05/13

People with TSC should see an ophthalmologist when diagnosed and annually thereafter to check for eye and vision problems.
當被診斷出是TSC病患後,必須要去看眼科醫生,此後每一年都要去檢查眼睛與視力。

05/14

Research into cancer, autism, epilepsy and other diseases is benefiting from tuberous sclerosis complex (TSC) research.

就癌症、自閉症、癲癇還有一些其他病的研究,都會因為TSC的研究而受惠。

05/15
Around 1 in 6,000 babies born are affected by tuberous sclerosis complex (TSC). Worldwide, more than 1 million people have TSC.

大約6000個新生兒,會有1個被TSC影響。全世界超過一百萬的人患有TSC。

05/16
Every 20 minutes somewhere in the world a child is born with tuberous sclerosis complex (TSC). 

每20分鐘地球的某個角落,會有一位TSC病患產生

05/17
People with TSC should have regular check-ups to monitor the disease and treat appropriately. Guidelines are available to describe the monitoring recommended by international experts in TSC.
TSC的患者必須有定期的檢查去追蹤疾病及適當地醫療。TSC國際的專家建議,可以得到如何監控的原則。

05/18

Magnetic resonance imaging (MRI) of the brain is recommended every 1-3 years until the person with tuberous sclerosis complex (TSC) is 25 years old. This is to look for a growth in the brain called a subependymal giant cell astrocytoma (SEGA) that can be life-threatening if left untreated.
建議TSC病患每1-3年進行一次腦部的核磁共振,直到25歲。主要是觀察腦部內星狀細胞瘤(SEGA)的生長。如果遺漏未處理是有可能危及生命的。

05/19

Tuberous sclerosis complex (TSC) is the most common genetic disorder associated with epilepsy and autism. 

TSC是一種常見的遺傳性疾病常伴隨著癲癇及自閉症。

05/20

Angiofibromas are raised red bumps that grow on the faces of people with tuberous sclerosis complex (TSC).These generally appear by 5 years of age and affect up to 90% of individuals with TSC.

TSC病患臉部會有紅色凸起的血管纖維瘤。一般來說會由5歲時開始出現並且影響到90%以上的TSC病患。

05/21

Daily application of broad spectrum sunscreen is recommended by tuberous sclerosis complex (TSC) experts. This is because UV radiation contributes to forming angiofibromas, one of the signs of TSC on the skin.

TSC專家建議可以每天敷用廣譜防曬霜。因為紫外線輻射有助於形成血管纖維瘤,血管纖維瘤是皮膚上顯現信號之一。

05/22

Seizures occur in approximately 85 percent of people with tuberous sclerosis complex (TSC), making epilepsy the most common brain manifestation of TSC.

大約85%的TSC病患會有癲癇發生。 TSC最普遍的腦部表現就是癲癇。

05/23

Very large mutations involving the TSC2 gene and adjacent PKD1 gene on chromosome 16 can lead to severe polycystic kidney disease during childhood. This occurs in less than 5% of people with tuberous sclerosis complex (TSC).

非常大的突變是牽涉到TSC2和PKD1相鄰的基因6號染色體上,這會導致兒童期嚴重的多囊腎疾病。 這種發生率在TSC的病人上是低於5%。

05/24

Infantile spasms are a common type of seizure in babies with tuberous sclerosis complex (TSC).Vigabatrin is recommended by TSC experts as first line treatment, where available, to control these seizures.

嬰兒點頭痙攣是TSC病患在嬰兒期的一種普通發作類型,Vigabatrin 是被TSC專家建議的一線用藥,可用來控制這些發作。

05/25

Infantile spasms are a common type of seizure in babies with tuberous sclerosis complex (TSC). Vigabatrin is recommended by TSC experts as first line treatment, where available, to control these seizures.

嬰兒點頭痙攣是TSC病患在嬰兒時期的一種普通發作類型,Vigabatrin 是被TSC專家建議的一線用藥,可用來控制這些發作。

05/26

TSC International (TSCi) tuberous sclerosis complex (TSC) organizations work with local health care professionals to improve the care given to the 1 million people around the world living with TSC.

國際TSC組織結合當地的健康照顧專家去改善全世界大約100萬TSC病人的照護。

05/27

Research in tuberous sclerosis complex (TSC) has already provided new treatment options for people with TSC. However, many people around the world do not have access to these medicines or the recommended surveillance for TSC. 

在TSC的研究上目前已經提供新的醫療選項。然而,許多TSC的病人還沒有進入這些醫藥或是被建議的監控系統內。

05/28

Almost half of people with tuberous sclerosis complex (TSC) will be diagnosed with an autism spectrum disorder.

幾乎有一半的TSC病人會被診斷帶有自閉症障礙。

05/29

Up to 90% of people with tuberous sclerosis complex (TSC) will have tumors in their kidneys called angiomyolipomas. Regular MRIs are recommended to monitor these tumors and minimize complications.

高達90%的TSC病人,他們的腎臟會有血管平滑肌脂肪瘤。規則的MRI檢測是被建議的,藉此去監控這些腫瘤以減少併發症。

05/30

All people with tuberous sclerosis complex (TSC) should receive genetic counseling when diagnosed.
所有TSC病人當他們被診斷為TSC時,應該接受遺傳諮詢。

05/31

Lymphangioleiomyomatosis (LAM) can occur in the lungs of people with tuberous sclerosis complex (TSC), almost exclusively in females. High resolution computed tomography is a test recommended for all adult women with TSC to test for LAM. June 1 is worldwide LAM awareness day.

淋巴管平滑肌瘤只會產生在TSC女性病人的肺部。所有TSC成年女性肺部的LAM是被建議用高分辨率的斷層掃描來檢測。六月一號是世界LAM的關懷日。















 
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