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推薦頻道:Gimmy a break

2009年11月30日 星期一

長期打嗝 恐罹多發性硬化症

長期打嗝 恐罹多發性硬化症

〔記者魏怡嘉/台北報導〕

「打嗝」有時並不單純只是腸胃毛病!台灣醫師研究發現,「打嗝」竟是「多發性硬化症」的臨床症狀表現之一。

台北榮總周邊神經科主任蔡清標振興醫院神經內科主治醫師王凱震,日前在香港舉行的亞洲多發性硬化症國際大會上發表此研究結果,引起各國相關領域醫師高度討論與重視,擬將「打嗝」列入臨床症狀診斷之一。

蔡清標表示,國內有十多名「多發性硬化症」女病患,發病初期都會打嗝,其中一人連續打嗝長達三個月,一直求助腸胃科,後來打嗝症狀逐漸好轉,未料兩年後,女子又因視神經炎、視力減退就醫,才被診斷出罹患「多發性硬化症」,事實上,她在兩年前開始連續打嗝時即已發病。

硬化疤痕組織無法修復

蔡 清標指出,「多發性硬化症」主要是因為身體免疫系統產生某種特殊抗體,來攻擊自己的神經組織,神經髓鞘是神經外面覆蓋的多層細胞膜,如同電線外包覆的絕緣 體一樣,髓鞘一旦受損,就像是電線外皮破損漏電,神經髓鞘在受損後,會自行修補,反覆修補後,留下白色的硬化疤痕組織,之後便無法再修復。這些硬化疤痕組 織往往有多處,所以稱為「多發性硬化症」。

好發於年輕女性

此病好發於年輕女性,如果硬化疤痕組織發生在脊髓,病患就會手腳無力、麻木;若發生在小腦,就會失去平衡;如果在視神經,就會視力模糊。亞洲人最常出現的症狀以視神經炎視力減退合併脊髓病變,產生手腳麻痺無力為主要症狀。

可經磁振造影掃描確診

蔡清標指出,「多發性硬化症」可經由磁振造影對腦部進行掃描確診,在硬化疤痕組織發生於脊髓的病患當中,有四十%疤痕組織是在延髓上,而延髓主要控制打嗝中樞、呼吸及吞嚥,這類病患九十%都有連續打嗝的症狀。

蔡 清標表示,台灣有近千名多發性硬化症病患每年新增一百五十名病患。其中已發現有十五、六名「多發性硬化症」女性病患在發病初期都有連續打嗝的症狀,短則 連續打一個星期,長則連續打一個月,甚至長達三個月。睡覺時,由於反射變弱,打嗝的症狀會減緩,不少病患都求助腸胃科,由於受損的神經短時間內會修復,所 以打嗝症狀好了後,病患多未再理會或是找出病因。

蔡清標提醒,早發現「多發性硬化症」,可大幅減少神經的傷害,若連續打嗝一星期以上找不出原因,又是年輕女性,就要特別注意。


不知道連續打嗝的症狀是如何? 是1分鐘內連續打嗝不停(每兩秒打嗝一次), 還是間歇性打嗝?
因為之前我在電視新聞上有看到一位美國小女孩(約4歲大)在1分鐘內打嗝約60次,鏡頭播出的時候她一直嗝個不停...說話都有困難...

我覺得自律神經失調應該就是多發性硬化症的火藥了, 剩下的就是引信~

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台灣人維生素D嚴重不足


最近完成的「國民營養健康狀況變遷調查」中,首次針對維他命D調查發現,國人維他命D嚴重不足,也可見為何國人骨質疏鬆情形越來越嚴重。

營養學者提醒,特別是女性重視美白、注意防曬,特別缺乏維生素D,且比一般男性更需要透過食物獲取維生素D,如果不曬太陽,至少要攝取5倍以上富含維生素D的食物才足夠。

維他命D不足,除了會影響骨質外,國外研究顯示,也可能影響骨骼肌肉承受癌症復發率以及自體免疫系統失調的疾病如:多發性硬化症,紅斑性狼瘡等。

正所謂 一白遮3醜的古老觀念, 應該是要好好的修正一下了, 不過沒有配合適當的運動依舊無法對維他命D作一有效得吸收. 現在的人多半都不運動, 也沒有足夠的時間運動和曬太陽(因為都是在室內坐在電腦前面工作一整天,要不就是在無塵室工作)

或許,不只是台灣人,甚至是全人類面臨的生活型態的演變所導致的結果.


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2009年11月29日 星期日

罕見十年 邀您共同見證~


台灣罕見疾病社會福利制度在政府及民間團體努力下已經發展十年了!這十年來,罕見疾病經歷過早期求藥無門四處借藥的困境,也曾經為了讓制度照顧孩子一輩 子,經歷立法與議題倡導的艱辛過程。這十年來,多少的罕見疾病病友及家庭因為政府及民間團體的共同努力下而實質受惠?而在國民健康局的相關罕病政策推動 下,提供哪些社會福利資源來照顧這些特殊的病患?

本集的「真情台灣」,將邀請衛生署國民健康局邱淑媞局長、罕見疾病基金會創辦人陳莉茵常務董事及兩位罕病病友家屬,一同在節目上與大家分享,台灣罕見疾病發展的重要十年,邀您一塊來見證!

◎節目來賓
邱淑媞 – 國民健康局局長
陳莉茵 – 罕見疾病基金會常務董事,也是罕病兒家長,病友暱稱為陳大姐
李瓊恩 –罕見楓糖尿症病友主昇母親
江鴻玲 –罕見趾甲髕骨症候群病患小彤的媽媽

◎播出時間
11月29日(日)
19:00~20:00
就在今天喔~

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Italian doctor may have found surprisingly simple cure for Multiple Sclerosis 這項發現掀起國際的一陣不小的騷動

Italian doctor may have found surprisingly simple cure for Multiple Sclerosis
這項發現掀起國際的一陣不小的騷動

An Italian doctor has been getting dramatic results with a new type of treatment for Multiple Sclerosis, or MS, which affects up to 2.5 million people worldwide. In an initial study, Dr. Paolo Zamboni took 65 patients with relapsing-remitting MS, performed a simple operation to unblock restricted bloodflow out of the brain - and two years after the surgery, 73% of the patients had no symptoms. Dr. Zamboni's thinking could turn the current understanding of MS on its head, and offer many sufferers a complete cure.

Multiple sclerosis, or MS, has long been regarded as a life sentence of debilitating nerve degeneration. More common in females, the disease affects an estimated 2.5 million people around the world, causing physical and mental disabilities that can gradually destroy a patient's quality of life.

MS目前全球有約250萬病人

It's generally accepted that there's no cure for MS, only treatments that mitigate the symptoms - but a new way of looking at the disease has opened the door to a simple treatment that is causing radical improvements in a small sample of sufferers.

Italian Dr. Paolo Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain - and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.

Dr. Zamboni's revelations came as part of a very personal mission - to cure his wife as she began a downward spiral after diagnosis. Reading everything he could on the subject, Dr. Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It happened to dovetail with some research he had been doing previously on how a buildup of iron can damage blood vessels in the legs - could it be that a buildup of iron was somehow damaging blood vessels in the brain?

He immediately took to the ultrasound machine to see if the idea had any merit - and made a staggering discovery. More than 90% of people with MS have some sort of malformation or blockage in the veins that drain blood from the brain. Including, as it turned out, his wife.

MS病患中有90%以上的人發現有靜脈血管窄化的現象

He formed a hypothesis on how this could lead to MS: iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves - Multiple Sclerosis develops.

He named the problem Chronic Cerebro-Spinal Venous Insufficiency, or CCSVI.

Zamboni immediately scheduled his wife for a simple operation to unblock the veins - a catheter was threaded up through blood vessels in the groin area, all the way up to the effected area, and then a small balloon was inflated to clear out the blockage. It's a standard and relatively risk-free operation - and the results were immediate. In the three years since the surgery, Dr. Zamboni's wife has not had an attack.

Widening out his study, Dr. Zamboni then tried the same operation on a group of 65 MS-sufferers, identifying blood drainage blockages in the brain and unblocking them - and more than 73% of the patients are completely free of the symptoms of MS, two years after the operation.

65位Ms病患在確認靜脈血管窄化的情性後進行手術, 手術後2年 超過73%的病患沒有復發..

In some cases, a balloon is not enough to fully open the vein channel, which collapses either as soon as the balloon is removed, or sometime later. In these cases, a metal stent can easily be used, which remains in place holding the vein open permanently.

Dr. Zamboni's lucky find is yet to be accepted by the medical community, which is traditionally slow to accept revolutionary ideas. Still, most agree that while further study needs to be undertaken before this is looked upon as a cure for MS, the results thus far have been very positive.

Naturally, support groups for MS sufferers are buzzing with the news that a simple operation could free patients from what they have always been told would be a lifelong affliction, and further studies are being undertaken by researchers around the world hoping to confirm the link between CCSVI and MS, and open the door for the treatment to become available for sufferers worldwide.

It's certainly a very exciting find for MS sufferers, as it represents a possible complete cure, as opposed to an ongoing treatment of symptoms. We wish Dr. Zamboni and the various teams looking further into this issue the best of luck.


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冬天暖身功 每天當早操做一做吧!

之前看到國民大會的特別來賓(高從文)所教導的活動身體筋骨的方法

和大家分享: 其實很多像我們小學做的早操都很有用, 重點是要 "持之以恆"




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2009年11月27日 星期五

美多發性硬化研究新曙光 血管阻塞倒果為因

美多發性硬化研究新曙光 血管阻塞倒果為因 【19:45】

前一篇的報導 已出現在自由時報上

〔中央社〕美國科學家正努力證實一項治療「多發性硬化症」(MS)的新理論,希望能證明這種發生在中樞神經系統的慢性疾病,是由於頸部和腦部靜脈血液流通受阻所造成。

英國廣播公司(BBC)報導指出,水牛城大學(TheUniversity of Buffalo)研究團隊深受義大利醫生桑波尼(Paolo Zamboni)的MS研究所吸引,因此希望能夠擴大證實他的理論。桑波尼認為,由病人的腦部掃描可知,90%的多發性硬化是因為靜脈流通受阻,使得腦部 受損所導致。

由水牛城大學茲瓦迪諾瓦博士(Robert Zivadinov)領導的團隊,計畫招募1100名多發性硬化病人參與研究,同時邀請600名健康人士和非MS的腦性疾病患者為對照組進行研究。

研究員將用超音波掃瞄多發性硬化病患,找尋頸部和腦部靜脈是否有阻塞現象。

水牛城綜合醫院(Kaleida Health)醫療長巴羅斯基(Margaret Paroski)表示,這項研究將顛覆先前普遍的認知,認為多發性硬化是異常免疫反應的結果。

她說:「當我在醫學院唸書時,我們常認為胃潰瘍是因壓力造成。不過我們現在知道,80%的病例是由於細菌感染。而茲瓦迪諾瓦博士的多發性硬化研究,可能形成全然不同的病因觀。」

義大利費拉拉大學 ((University of Ferrara)桑波尼醫生相信,血管阻塞是多發性硬化的原因而非結果,阻塞會導致血液中的鐵質進入腦部組織。他曾進行相類似的靜脈疏通手術,以促進血液正常流動。

他在接受加拿大電視公司(CTV)訪問時表示:「我在多發性硬化病人身上找到靜脈阻塞的證據。我確信這對大眾非常地重要。」(譯者:中央社盧映孜)

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2009年11月24日 星期二

重大的醫學發現 : MS的原因找到了?!


The Liberation Treatment: A whole new approach to MS

一位義大利外科醫師,Dr. Paolo Zamboni利用超音波檢查人體的神經細胞,發現有MS病患中的血管有某部分會呈現"窄化"現象. 而這些現象正是引發MS的原因 (這真是太棒了! 找到了目前看起來算是物理上最接近的原因了!!)你們一定要點選第一行的連結到原始的網頁去看影片,說明的相當棒且清楚!!

CTV.ca News Sta

Date: Sat. Nov. 21 2009 6:02 PM ET

Amid the centuries-old castles of the ancient city of Ferrara is a doctor who has come upon an entirely new idea about how to treat multiple sclerosis, one that may profoundly change the lives of patients.

Dr. Paolo Zamboni, a former vascular surgeon and professor at the University of Ferrara in northern Italy, began asking questions about the debilitating condition a decade ago, when his wife Elena, now 51, was diagnosed with MS.

Watching his wife Elena struggle with the fatigue, muscle weakness and visual problems of MS led Zamboni to begin an intense personal search for the cause of her disease. He found that scientists who had studied the brains of MS patients had noticed higher levels of iron in their brain, not accounted for by age. The iron deposits had a unique pattern, often forming in the core of the brain, clustered around the veins that normally drain blood from the head. No one had ever fully explained this phenomenon, considering the excess iron a toxic byproduct of the MS itself.

他懷疑血液中過多的鐵會聚集在血管(靜脈)周圍,而阻礙了流出頭部的血液,而過去沒有人完全解釋這個現象,只是認為鐵的存在是一個毒性物質.

Dr. Zamboni wondered if the iron came from blood improperly collecting in the brain. Using Doppler ultrasound, he began examining the necks of MS patients and made an extraordinary finding. Almost 100 per cent of the patients had a narrowing, twisting or outright blockage of the veins that are supposed to flush blood from the brain. He then checked these veins in healthy people, and found none of these malformations. Nor did he find these blockages in those with other neurological conditions.

Dr. Zamboni利用都卜勒超音波檢驗MS病患的頸部而有重大的發現!! 他所檢查的MS病患中全部的頸部血管都有只窄化的現象, 而正常人則不會有此一問題!!

"In my mind, this was unbelievable evidence that further study was necessary to understand the link between venous function and iron deposits on the other," Zamboni told W5 from his research lab in Ferrara.

What was equally astounding, was that not only was the blood not flowing out of the brain, it was "refluxing" reversing and flowing back upwards. Zamboni believes that as the blood moves into the brain, pressure builds in the veins, forcing blood into the brain's grey matter where it sets off a host of reactions, possibly explaining the symptoms of MS.

也因為如此, 所以血液無法順利的流出或流進大腦,進而造成腦部血管壓力的上升而產生了白色的斑塊

"For me, it was really unbelievable to understand that iron deposits in MS were exactly around the veins. So probably, it is a dysfunction of drainage of the veins," Zamboni said.

"This is very important, because iron is very dangerous, because it produces free radicals, and free radicals are killers for cells. So we need to eliminate iron accumulation."

我們要解決鐵的不當聚集和沈積!!

Zamboni dubbed the vein disorder he discovered CCSVI, or Chronic Cerebrospinal Venous Insufficiency(請按此連結瞭解何謂CCSVI), and began publishing his preliminary research in neurology journals.

CCSVI: 靜脈血管無法即時的將缺氧的血液排出.

He soon found that the severity of the vein blockages were located corresponded to the severity of the patient's symptoms. Patients with only one vein blocked usually had milder forms of the disease; those with two or more damaged veins had more severe illness.

Zamboni found blockages not only in the veins in the neck directly beneath the brain -- the jugular veins --but in a central drainage vein, the azygos vein, which flushes blood down from the brain along the spine. Blockages here, he found were associated with the most severe form of MS, primary progressive, in which patients rapidly deteriorate. For this form of MS, there currently is no effective treatment.

Dr. Zamboni發現不只在頸部腦幹下方的靜脈會發生,很多靜脈都會發生,如: the azygos vein(jugular veins;靠近脊椎的靜脈)

As for how these vein abnormalities form, Zamboni isn't sure. He believes, though, that congenital defects, problems that likely formed before birth, can be blamed for most of the problems, though this has not been conclusively proven.

但是為何會造成靜脈的窄化呢? 仍無法回答此一問題.

Most neurologists Zamboni initially approached with his findings dismissed them. But one specialist, Dr. F. Salvi, at Bellaria Hospital in Bologna, was intrigued by the concept. He began sending Zamboni MS patients for CCVIS testing, to see if what he was finding was correct. The images of narrowed or blocked veins, called "strictures," were irrefutable for Salvi.

Focus on a treatment

But Dr. Zamboni had an even more important idea. If key veins of MS patients were blocked, perhaps he could open them and restore normal blood flow?

Taking a page from standard angiography, in which doctors use balloons to open up blocked arteries that feed blood from the heart, he enlisted the help of vascular surgeon Dr. R. Galeotti, also at the University of Ferrara and Santa Anna Hospital. Three years ago, the team began a study in which they treated 65 MS patients to see if endovascular surgery would restore flow in these vessels and lessen MS symptoms.

The study detailing those results will be published in the Journal of Vascular Surgery on Nov. 24. But preliminary results, already released, show patients had a decrease in the number of new MS attacks, a big reduction in the number of brain lesions that define MS, and improved quality of life. The only time symptoms returned for the patients was when the veins re-narrowed.

Because the surgery freed the blood flow, the team dubbed the procedure "The Liberation Treatment."

Zamboni's sense is that the earlier patients are diagnosed and treated, the more function they will preserve, and the less damage the improper blood flow will do to the brain.

"Because MS is a progressive disease and strikes young people, if we lose time, there are a lot of young people that will progress without possibility to get back. This is very heavy for me," he says.

Zamboni has also been studying the prevalence of CCSVI with a team at the University of Buffalo in New York, in collaboration with Dr. Robert Zivadinov. That study, to be published in January, has looked at 16 MS patients, including eight from the U.S and eight from Italy. All have been found to have blocked veins of CCSVI, just as Zamboni described, and all eventually underwent the Liberation Treatment.

Relief for patients

One of those patients was Buffalo resident Kevin Lipp. Lipp had MS for over a decade, and as part of the study, discovered he had five blocked veins in his neck. After undergoing the Liberation Treatment 10 months ago, he says he hasn't had a single new MS attack.

Zamboni emphasizes that the Liberation Treatment does not make people in wheelchairs walk again. Rather, it seems to stop the development of further MS attacks, and in some cases, improves movement and decreases the debilitating fatigue that are the hallmarks of MS.

Zamboni強調, 這種血管擴張手術(Liberation Treatment )無法使坐著輪椅的病人再度站起來,但是這能夠阻止MS的發作, 而且有例子顯示, 能夠改善行動能力和減少疲勞感

The foundation that has sponsored Zamboni's research, the Hilarescere Foundation, also urges cautious restraint.

"We can't give the illusion to patients that this is a guaranteed treatment and it is easy. This is not right. And we have never done this," says Hilarescere President Fabio Roversi-Monaco. "We don't say this is a cure for M.S. We only say that research is advancing, and there is encouraging data but we are waiting for more conclusions."

Dr. Zivadinov in Buffalo is now starting a new study, recruiting 1,600 adults and 100 children, half of them MS patients. He plans to use ultrasound and MRI scans to confirm if those with MS also have CCSVI and if their family members have the abnormalities too.

Prof. Mark Haake, a neuro-imaging scientist at McMaster University and Wayne State University in Detroit is also intrigued by Zamboni's findings. He has long been seeing iron deposits in the brains of MS patients using a specialized MRI analysis called SWI - specific weighted imaging. When he saw Zamboni's initial publications, he immediately contacted the Italian doctor and began collaborating.

Population studies under way

Haake too is initiating a study, asking neurological centres across North America and Europe to take some extra MRI scans of the neck and upper chest of MS patients. The scans can then be electronically sent to his research team for analysis. He believes this grassroots approach could spur larger and more in depth studies. He's hoping he can engage MS specialists and vascular surgeons, interventional radiologist around the world to study the theory and then move to diagnosing and treating MS patients quickly.

"I think patients do play a role, because there are millions and millions of dollars donated to MS Societies and a lot of money set aside by the government to study MS research and right now, 99.9 per cent of that money goes somewhere else," he told W5.

"So the patients need to speak up and say 'We want something like this investigated, at least at an early stage, to see if there is credence to this theory.' Even if it is 10 or 20 per cent of these people who can be helped, that needs to be investigated," says Haacke.

Haake's research is being done with no funding; he's unwilling to wait the nine months to a year needed to get formal research funding applications approved. Urgency, he says, is needed in finding the answer to the question of whether Dr. Zamboni is right.

"Certainly, I continue my battle because I am fully convinced that this is the right thing for the patient," he says.

The MS Societies of Canada and the U.S. are reticent to support Zamboni's theories. They maintain that: "Based on results published about these findings to date, there is not enough evidence to say that obstruction of veins causes MS... It is still not clear whether relieving venous obstructions would be beneficial."

Interest in CCSVI growing

But CCSVI has become a subject of intense interest among MS patients who are texting and emailing details of Zamboni's work, locating the few centres around the world that have started to work on studies on CCSVI and the Liberation Treatment.

Zamboni says every day, MS patients hear about his theory and either write, email or call him asking for treatment he can't yet provide. Still, some surgeons in the U.S. are now offering the surgery Zamboni's team has pioneered.

Jeff Beal, an L.A-based, Emmy-Award-winning musical director has already paid to have the surgery procedure. After he was diagnosed with MS five years ago, he was left unable to work a full day and worrying he would spend the rest of his life in a wheelchair. Unable to come to terms with the diagnosis, his wife, Joan, set to find new treatments and eventually came upon Zamboni's work. Unable to get her husband treated in Italy, she convinced a Californian vascular surgeon who already performs similar surgery on leg veins to look at Zamboni's work and test Jeff for CCSVI. Jeff was diagnosed with two blocked jugular veins and treated with the Liberation Treatment. (with a slightly different procedure than the italan one..using Stents) He now says he has much more energy and none of the chronic fatigue that used to limit his activity.

"I reached what I would call sort of a higher plateau, in the sense of the most debilitating symptom, which is the fatigue. So, I still have fatigue every day, I still battle it; it's still one of my symptoms. But in terms of the total reservoir of energy, it's much greater than it used to be. And that's a huge gift, especially to my family," Beal told W5.

His wife Joan was delighted with the surgery's results.

"Suddenly, he's helping Henry with his homework and he's playing trumpet duets with Henry and he's awake. And there's this presence in the house that hadn't been there for two years," she said.

Joan has now become a "cheerleader" of Zamboni's work on MS chat sites, urging other patients to show their neurologists the material being published by the Italian team and to ask them to consider setting up a study in other MS clinics.

Among all of Zamboni's success stories and the patients who sing his praises is his wife Elena. Her MS caused her to lose her vision for a time and develop what she called "violent" attacks. She had difficulty walking and was losing her balance and feared a life in a wheelchair unable to care for herself. Elena became one of her husband's first ultrasound test patients and was found to have a complete closure of the azygos vein in her central chest. She was one of the first to be liberated almost three years ago. After having regular debilitating MS attacks for nearly a decade before, Elena has been symptom-free ever since. An elegant, intelligent woman, she now has a quick walk, with no sign of disability. Her husband couldn't be happier.

"What I think is this is probably the best prize of the research," says Zamboni.

偉大的Dr. Paolo Zamboni!!

無疑的, 這是一項對於阻止Ms再發做的一項外科手術的成就!!



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2009年11月21日 星期六

保險對我們病友和家人的重要性

在歷經這一切之後(去年5月下肢癱瘓後), 讓我對於保險有了更深一層的認識
特別是現在社會當中曾出不窮且越來越多的怪病下(沒有藥可醫的病)
當我們身體還是健康的時候, 一定要去保個險,
因為全民健保不會負擔這麼多的龐大醫藥和住院費用(你有錢也不一定住得了院) 甚至,短期內可能需要的看護費用

一般而言,保險對於我們這種病友的部份應該是醫療險(住院)的內容
通常,急性發作最需要得就是3~5天的住院, 一般的醫療險的內容多半住院一天給付為1500
實在不太夠, 還好我本身有保3個險所以住院的費用都還能夠勉強完全給付(當然不希望用到)

但是, 若已經確診, 則在醫療紀錄上會有紀錄(多發性硬化症)
當然還有一點, 是否已經有重大傷病卡或是身心障礙手冊?
所以當你在審視醫療保險的內容時(一定要拿到合約版本),
並且看清楚但書的部份(但書會說明許多重大傷病只有一次給付之類的字眼)
若但書沒有註明
多發性硬化症的話,就可以再加保.

若有上述其中一項,則可能會有所問題,不然就是保費會比較高.

趁著健康的時候好好審視一下自己的保險合約吧.
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2009年11月17日 星期二

天氣驟冷會讓肢體緊繃難受

最近天氣驟冷, 我的下肢就有感覺了, 突然間變得比較緊繃和難受

也聽說有病友也有類似的情形

在這裡千萬呼籲大家, 一定要做好保暖.

因為身體對於冷熱的敏感度大大提高

也讓肌肉多少受到影響

保持良好血液循環有助於症狀的紓解

重點是: 保暖不代表泡湯喔!!(不要大於體溫)

只要維持體溫不要太低即可.
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2009年11月15日 星期日

當兩性關係遇上重大疾病時

Men more likely than women to leave partner with cancer

當兩性關係遇上重大疾病時
本篇文章是以美國境內罹患有重大疾病如癌症和MS的兩性關係所做的調查, 中文要等一等

NEW YORK - Women are six times more likely to end up separated or divorced if they are diagnosed with cancer or multiple sclerosis than if their male partners were facing the same illness, according to a U.S. study.

The study confirmed earlier research of a divorce or separation rate among cancer patients of 11.6 per cent, similar to the general population, but found the rate jumped to 20.8 per cent when the woman was sick versus 2.9 per cent when the man was ill.

"Female gender was the strongest predictor of separation or divorce in each of the patient groups we studied," said Marc Chamberlain, director of the neuro-oncology program at the Seattle Cancer Care Alliance.

The researchers said the reason men leave a sick spouse can be partly explained by their inability to rapidly adjust to becoming a caregiver and to look after the home and family.

The study also found links between age and length of marriage and the likelihood of divorce or separation. Longer marriages were likely to remain more stable but the older the woman, the more likely the partnership would end.

The study, conducted with the Huntsman Cancer Institute at the University of Utah School of Medicine and Stanford University School of Medicine, was based on following 515 patients from 2001 and 2002 until 2006.

The patients were divided into three diagnostic groups: those with a malignant primary brain tumor, those with a solid tumor with no central nervous system involvement, and those with multiple sclerosis. Almost half of the patients were women.

Chamberlain said the study was initiated because doctors noticed that in their neuro-oncology practices, divorce occurred almost exclusively when the wife was the patient, but in all cases the woman was more likely to end up alone.

Researchers also looked at the quality of life among the patients who separated or divorced.

They found these patients used more anti-depressants, took part less in clinical trials, had more frequent hospitalizations, were less likely to complete radiation therapy and more likely not to die at home.

The researchers said in the study to be published in the journal Cancer that medical providers be sensitive to possible marital discord in couples affected by a serious medical illness, especially when the woman is the affected spouse.

"Early identification and psychosocial intervention might reduce the frequency of divorce and separation, and in turn improve quality of life and quality of care," they said.

希望大家都能不離不棄~
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2009年11月13日 星期五

居家值機計畫 身障就業新模式

居家值機計畫 身障就業新模式

更新日期:2009/11/12 15:05

勞委會今年三月起推動身心障礙者「居家值機實驗計畫」,透過電信網路等設施,八位中重度以上身心障礙者不必出門,在家就可當起稱職的職災諮詢客服人員。勞委會主委王如玄表示,勞委會有相關補助及獎助措施,希望企業多加利用,給身心障礙朋友一個機會。(黃悅嬌報導)

十四年前因車禍造成下半身癱瘓的許豈逢,現在透過電信科技與電腦網路等軟硬體設施,成為勞委會職訓局職災諮詢中心的客服人員,跟其他七位中重度身心障礙者一起參加勞委會的「居家值機實驗計畫」,許豈逢說,他用聲音重新找到生命的出口。

勞委會表示,這項計畫從今年三月上線,到十月底止,服務總量超過兩萬兩千通,撥通率與15秒內應答率都是100%,顯示身心障礙朋友透過專業訓練後,也能呈現良好的服務績效。

由於試辦成效良好,勞委會主委王如玄呼籲企業多加利用,給身心障礙者朋友一個機會,勞委會也提供相關僱用獎助、職務再設計補助、職前培訓補助。

提供給行動不便的病友謀生的機會,也是政府的美意, 讚!


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2009年11月10日 星期二

新藥給了MS病人新的希望

New drug therapies and promising studies offer hope for MS patients
新藥給了MS病人新的希望 By Iris Winston , For Canwest News Service November 8, 2009
Early diagnosis of multiple sclerosis can change the lives of people living with this chronic disease of the central nervous system.

“Today, there is a huge urgency to make the diagnosis because we know that early and aggressive treatment can alter the course of the disease,” says MS specialist and University of Alberta assistant clinical professor Dr. Brad Stewart. “Back 15 or 20 years, diagnosis was less urgent because we had nothing to offer the patient.”

過去的15~20年來, 因為診斷的不積極導致治療的失敗, 其實早期的發現和積極的治療有機會治癒.

Then, says Dr. Ruth Ann Marrie, the director of the multiple sclerosis clinic of the University of Manitoba Health Sciences Centre, “treatment largely focused on acute management of relapses — those times when people presented with sudden worsening of symptoms like vision loss, limb weakness or numbness. We tried to help them manage some of the chronic symptoms like fatigue and difficulty in walking.

大多的治療都關注在解決復發的問題; 視力喪失; 下肢無力; 或麻痺; 疲累等症狀

“We didn’t have medication that we thought could alter the long-term course of the disease.”

但我們從來都不真正做長期的改變

In 1995, the first drug treatment that could modify the disease was approved. Shortly afterwards, three more drugs of the Interferon type were added. In 2006, a fifth drug was approved.

“All five” — Avonex, Betaseron, Copaxone, Rebif and Tysabri — “are drug therapies that attenuate the disease by helping control the intensity and frequency of attacks,” says Stewart Wong, the Multiple Sclerosis Society of Canada’s media and public relations national senior manager.

Avonex, Betaseron, Copaxone, Rebif and Tysabri這些藥物只能夠控制復發的頻率和降低強度

“When you treat MS earlier with some of these disease-modifying therapies, the course of the disease is easier to manage and you have a better quality of life…. The mid-1990s opened the way to a sustained period of hope and progress in medicine, the course of research and how people can live with the disease.”

But Vancouver MS specialist and former medical director of the city’s MS clinic Dr. Stanley Hashimoto says the impact of the therapies introduced in the mid-90s was relatively modest.

“Their impact was exaggerated significantly through a lot of marketing,” he says.

其實,藥物的影響被市場所誇大了

“We needed something that had an actual benefit in terms of therapy and disease modification.”

Dr. Paul O’Connor, the multiple sclerosis program director of St. Michael’s Hospital, Toronto, and president of the Canadian network of multiple sclerosis clinics, agrees “these drugs have modest effectiveness, but their introduction in 1995 did mark the advent of a new era (in MS treatment).”

The next generation of drugs is looking even better, says Stewart.

下個世代的藥物一定會更好

“All the years of research are really bearing fruit. We may not have a cure yet, but if you can get someone to go into remission 90 or 95 per cent of the time, that’s a whole lot better than we have now. And we have also had some advancement in how we treat secondary progressive MS. We now have an oral medication that works up to 70 per cent of the time to treat exacerbations.”

目前我們已有口服的藥物來應付第二型的MS(漸進廢退型)且成效可達70%

加油吧!! 研究人員和病人!!


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心情點播:心中仍然有一份對伴侶的希望之火

前不久某日,因為睡眠中斷,結果醒來後就睡不著, 去看看電視,無意中看到了一段電視訪談節目

主角是:黃乃輝台灣新移民成長關懷協會理事長曾獲十大傑出青年獎。卻不向命運低頭,努力向生命奮鬥挑戰的故事。同時也訴說著他尋找到人生中伴侶的動人故事
黃乃輝從小因腦性麻痺,導致說話,走路都十分困難。九歲才會站立,十三歲才入小學,父母離異後拋下他,只得和奶奶四處漂流遷徒。坎坷的命運,學習中的困境,國中三年便挑起生活重擔的壓力,在半工半讀的艱辛生活搏鬥中,交織著學校,社會的人間溫暖,使得他的個人成長之路,有如攀爬的荊棘,向著陽光,努力伸展,從而爭出一片寬闊的天空。也為我們的社會留下溫馨感人的寫照。人生是一連串的挑戰,每個階段必有每個階段必須突破的障礙,不要以為自己能力不足,就退縮不前,人活著,就必須面對種種考驗,您用什麼心態去對待,就能決定什麼樣的方向,也能決定什麼樣的實踐力,更能決定最後應得的成果;我們常喟嘆,人生不如意十之八九,但當面臨困境時,您又是如何面對?路,是人走出來的,只要有心向前,終能披荊斬棘,達成目標。就像黃乃輝,抱著「取之於社會,用之於社會」的心,他不但在花蓮成立全台灣第一個殘障插花訓練創業協會,幫助障同胞學習與創業,更由於他的一席話,促使政府為殘障朋友舉辦多項活動,更加重視殘胞的福利。

因緣際會取了來自柬埔寨的強娜威, 一位17歲的少女, 和他年齡相差19歲. 雖然他們的相處過程中不乏摩擦,但是強娜威並沒有因此打退堂鼓(雖然當時見面之後有如從天堂落入地獄一般), 至此,我深深地佩服強娜威本人!! 他是如此的認命,且也不像命運低頭, 如今他們也有一個可愛的女兒. 就像一般的小家庭一樣,過著平凡人的婚姻生活...

後來有長輩勸我娶外籍新娘,我跟人家去柬埔寨湊熱鬧,只看了兩個女孩,第一個不要我,第二個我只跟她見面四分鐘,我問她敢不敢嫁給我,她說:「我家這麼窮,你都不會看不起我,我為什麼不敢嫁給你?」我就娶了她。
Q:你沒考慮跟她個性合不合?
A:沒有。殘障對我來講不悲哀,結婚才真不堪回首,最初半年我很後悔結婚,兩人語言不通,互相不了解
又沒感情,什麼都能吵,我煮菜給她吃,她都不吃,只拿柬埔寨帶來的辣椒加鹽巴拌飯。我熬了半年,每天都繃得很緊,等她會講中文後感情才變好。

慶幸能娶到好老婆
但我娶外籍新娘是好的,因為腦性麻痺者容易神經緊張,做愛一興奮就出來了,無法玩很久,而且做一次愛要躺一天才能恢復,非常疲勞,台灣女孩不可能接受。我老婆跟我說:「人家罵我騙你錢,我幹嘛騙?要害死你很簡單,一天跟你要三次,保證你就掛了。」
有個越南新娘問我會不會擔心我老婆跑掉?其實我不擔心她跑掉,我擔心我跑掉,因為腦性麻痺不可能活很久。我殘障能娶到好老婆,她這麼窮的小孩能住豪宅,我們都很滿足了。

以下節錄某些訪談:
Q:你支持身心障礙者娶外籍新娘嗎?
A:我不反對,但至少要像我這樣能生活自理,結婚才有意義。有些殘障者嚴重到只能在地上爬,還結婚,我看了傻眼,他們搞不好連什麼叫性關係都不懂,只是花錢買個新娘,婚姻能長久嗎?
一 般女生會接受肢體殘障,但很難接受我們腦性麻痺患者。我25歲時,有個台大女生很仰慕我,看我失戀,就說:「能愛的你不愛,不可能的你偏偏愛。」一年後,她懷孕了,我想結婚,她不要,把孩子拿掉後就離開我,因為她父母反對。你看,她已對我付出那麼多,一碰到要結婚還是不願意。


對於他們的過程和心裡,我心中著實能夠體會, 充滿了萬般的無奈和辛酸, 不過, 我想, 既然黃乃輝先生的遭遇都已經如此,還能夠獲得上天的眷顧, 那我又何必當個楚留香(千山我獨行不必相送)呢? 雖然這樣對感情雙方都沒有負擔, 但是自己內心身處總是覺得有那麼一絲絲的火苗依舊點燃著. 希望能夠遇到對得一起扶持走完人生道路的伴侶. 而且是能夠彼此相處自在的伴侶,就像朋友一樣. 誰叫我是一個保有赤子之心的純真小孩,就偏偏相信Love~ I believe in Love!! And you?

大家可以上google搜尋 "強娜威" 和 "
黃乃輝" 就可以知道他們的故事~
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2009年11月8日 星期日

好文章分享

對於病友們而言,與疾病共行的人生路,荊棘滿佈、崎嶇漫長。從被告知患病的開始,到頑強抗爭、最後與疾病共處的過程中,不論您是採取無為而治還是短兵相 接;是視而不見還是兵來將檔水來土淹,在面對著有限但未知的生命長度,您是以怎樣的勇氣及態度沿途披荊斬棘,開拓出寬廣無悔的人生路呢?又或者,您是罕病 的家屬,面對家中生病的家人、肩負者沈重的照顧責任,您又是如何在人生路上自我調適?正如一位病友所言「人不是為了痛苦而活著,而是為了追求幸福才承受痛 苦這句話有點兒給它沈重...。

對生命的喝采:走出自己的路

佳文共欣賞(引述連結多發性硬化症病友的文章)

走出自己的路1

走出自己的路2

走出自己的路3

走出自己的路4

走出自己的路5

大家都很辛苦的一路走過來,也都不畏懼這個病,
這或許是要給我們一種考驗或試鍊, 也或許是要我們停下腳步,好好的想一想, 重視自己的身體.

不僅是
多發性硬化症病友,其他的罕見疾病病友也是一樣面臨著考驗或試鍊, 讓我們一起加油吧!

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中國科研人員找到多發性硬化病潛在藥靶

中國科研人員找到多發性硬化病潛在藥靶
2009年10月20日 14:10 來源:解放日報 徐瑞哲

我國科研人員揭示出一類核糖核酸在自身免疫性疾病中的調控新機制,並提示多發性硬化病可能存在新的診斷依據和藥物作用靶標。這是裴鋼院士研究組及其合作者的最新研究成果,相關論文昨天被國際著名學術期刊《自然·免疫》線上發表,並將正式出版。

  多發性硬化症源自中樞神經系統病灶,是一種常見的自身免疫性疾病,臨床表現包括視物模糊,感覺、運動異常,智慧、情感等高級功能障礙。因其在中 青年人群中多發,且有較高致殘率,對社會和家庭造成極為不良的影響。數據顯示,在西方一些國家,該病患病率高達十萬分之一百到三百;而在我國,據不完全統 計,該病患病率也已達約十萬分之五,並呈逐年上升趨勢。

  近年來,免疫學家在人體內發現一種名為“TH—17細胞”的細胞亞群,它們被大量誘導並主動入侵中樞病灶部位,能加速誘發組織損傷。科學界認為,深入理解和揭示它們的分子調控機制,對於治療多發性硬化症等自身免疫性疾病具有重要意義。

  在中國科學院上海生命科學研究院生物化學與細胞生物學研究所,裴鋼研究組通過多年來在細胞分子層面的研究,發現一種特殊核糖核酸“非編碼小 RNA”,與“TH—17細胞”的分化密切關聯。他們證實,在實驗用的多發性硬化症模型小鼠中,人為提高這種小RNA的水準,便會加重小鼠病情;而抑制該 小RNA水準,則能顯著減輕病情。研究表明,正是這種“不受歡迎”的小RNA,促進了小鼠的外周淋巴結以及中樞病灶部位的“TH—17細胞”分化。

  專家表示,這項研究不僅揭示了“非編碼小RNA”在多發性硬化症發生過程中的新機制,也為包括多發性硬化症在內的自身免疫性疾病提供了可供借鑒的治療策略。據了解,此項成果得到科技部、國家自然科學基金、市科委和中科院資助,課題組已為該成果申請相關專利。

  《自然·免疫》同行評審專家評價認為,這一成果有可能為該領域研究開闢新的思路和方向,它提示:這種小RNA有望開發為一個診斷多發性硬化症的靈敏標誌物,以及潛在的藥物設計靶標。(徐瑞哲)



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2009年11月3日 星期二

最近沒事別到人群多的地方喔

很遺憾的,我與幾米的星空特展就這麼的錯過了

因為工作的關係和天候的因素等等,讓我無法成行

沒關係,我相信之後會再有機會的

看到新聞上各個國家新流感H1N1盛行的消息,

要敬告大家,沒事別出入公共場所

旅展沸沸揚揚,應該會對新流感的疫情推波助瀾吧!


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