網誌文章搜尋建議

給多發性硬化症MS病友和親友的建議:
如要搜尋站內相關文章可多利用
"搜尋此網誌的文章內容"的功能,這樣就可以快速的找到你想要得資訊而不需要從第一篇開始看了.
有關CCSVI(靜脈血管窄化及手術的資訊)可在相關連結以及相關MS blog內

推薦頻道:Gimmy a break

2010年7月27日 星期二

'Unless you have MS, you don't know. You can't know'除非你得到MS這個病,否則你永遠不會瞭解,你也無從瞭解!

'Unless you have MS, you don't know. You can't know'
除非你得到MS這個病,否則你永遠不會瞭解,你也無從瞭解!

這個文章寫得很棒,就如同之前我所說得一句話:

唯有親身經歷的人才能夠體會!

Woman ready to try unproven procedure to repel disease

Posted By Grant LaFleche, St. Catharines Standard

Posted 3 hours ago


Jayne Thomas isn't concerned about the risks. She's willing to face the unknowns. She isn't willing to wait.

Jayne Thomas 不會考率任何風險,他願意面對未知的結果,更重要的是,他不願意再等待了!

Time and her body are Thomas' enemies. They've cursed the St. Catharines woman to a wheelchair, and she knows it will only get worse.

時間和她的身體就如同她的敵人一樣,詛咒著她將待在輪椅,而她知道她的情形將變得更糟。

So she will travel to New York State in the fall for an operation that's purportedly able to treat her multiple sclerosis, the disease turning her body against her.

今年秋天,她將要旅行到紐約尋求治療MS的靜脈擴張術

The treatment, started in 2009 by an Italian doctor, remains unproven. Studies and clinical trials, some funded by the MS Society of Canada, are ongoing. But as it stands there are more questions than answers.

Thomas is unconcerned. She'll roll the dice, knowing that after travelling to the United States and spending $8,000, her condition might remain unchanged.

就像擲個骰子一樣,即使花了8000美元到紐約,結果可能不變,但是,她依舊不會感到擔憂。

"Unless you have MS, you don't know. You can't know," said Thomas.

她說除非你得到MS這個病,否則你永遠不會瞭解,你也無從瞭解!

"You live in fear because you don't know when it is going to hit you. You just don't know when you will wake up in the morning and you cannot put your foot on the floor and stand up."

你成天活在恐懼當中,因為你不知道何時它會再度發生!你不會知道當每天早上醒來,你是否還能夠把你的雙腳放在地板上並且站起來。

The operation treats chronic cerebrospinal venous insufficiency, or CCSVI. The Italian doctor Paolo Zamboni said in November that reduced red blood flow to the brain because of CCSVI may be associated with MS, an illness that attacks the brain and spinal cord.

Zamboni's idea is that the CCSVI could cause an iron overload in the brain and spinal cord, causing MS. Through angioplasty, a procedure that expands obstructed blood vessels, he said the condition of MS patients can be improved.

Thomas said she first learned about it from the CTV program W-5 shortly after Zamboni made his findings public.

"I was watching it with my daughter and she started to cry and my heart began to race," she said. "I immediately went on the computer to find out more about it."

Thomas是從網路上的CTV W-5 頻道所看到的新聞,當她和她女兒看到時,她女兒哭了,而她的心似乎活了起來,"我立刻用電腦找尋有關CCSVI的資料"

What she found online made her heart sink.

但是網路上仍有很多不同的意見在相互爭論著,這讓他的心又沉了下來

Although angioplasties are often done for patients with heart conditions, they are not approved to treat MS in Canada. Aside from clinical studies, it is available at a few clinics in the U.S., along with ones in India and Poland.

The procedure is regulated by the provincial and territorial health ministries, which have not given the procedure — dubbed liberation treatment in the MS community — a green light because the science is still in question.

"The big question is, what is the link?" said William Tennyson, client services co-ordinator for the Niagara Peninsula Chapter of Hope of the MS Society. "The ministry isn't going to fund it until the science is done."

Studies done since Zamboni first published have not produced the same results.

A June article in Neurology Today said studies found some MS patients have CCSVI, but not in the same numbers Zamboni reported. Moreover, it isn't clear if CCSVI is a cause of MS, a result of it, or is not connected at all.

Nonetheless, liberation treatment is not being tossed aside. Last month, the MS Society of Canada announced $2.4 million to fund several studies in Canada and the U.S. In a written statement Monday, Health Canada said "the Minister of Health, Leona Aglukkaq, has asked Dr. Alain Beaudet, the Canadian Institutes of Health Research's President, to provide her with advice on how to advance research in this important area."

Tennyson said it may take up to two years before the science is in. However, many MS patients don't want to wait.

"These are people who went without for so long, and then all of sudden along comes Dr. Zamboni and the procedure isn't available here," he said. "But clinical trials are there for a reason. They are safeguards."

Thomas said she's spent too much time in the chair and won't wait for MS to take more of her life away.

Thomas說她已經花了太多時間在輪以上而她將不會在一直等著MS把他的生命/生活 奪走!

"I need this now," she said. "I think it's awful that I cannot get this done here at home. But when you have MS, you'll do what you have to."

Thomas說:我現在就需要,雖然我認為要遠赴紐約動手術的舉動很嚇人,但是當你得到MS,你會去做你應該做的。


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