Mastocytosis Society Canada Support Forum:British Columbia, Alberta, Northwest Territories, Manitoba, Saskatchewan, Nunavut, Ontario, Quebec, Prince Edward Island, Nova Scotia, Newfoundland and Labrador, New Brunswick, Yukon::
« Language Translation Supporters »
Welcome Guest. Please Login or Register. Dec 27, 2009, 8:48am
Language Translation Supporters « Thread Started on Feb 19, 2009, 8:33pm »
Hello Everyone,
We want to make an effort to help members who have a different first language than english.
Over time, as we find members who are willing and able to offer translation supports, we will have threads in this section for different languages. Rather than try to translate the entire forum, new members who communicate in non-english language can pose questions. A volunteer member will then support them by communicating answers and encouragement in their native language.
I hope this works. Please feel free to make suggestions about this. If any member knows additional language(s) besides english, and is interested in helping here, please let me know. Also note, you can just jump in and create a thread - for example, Italian - any member could make a thread for Italian in this section as long as they are able to communicate with others who show up in that thread.
afftobus Between 0 and 50 Posts! (I'm new to posting) member is offline
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Re: Language Translation Supporters « Reply #5 on Jun 13, 2009, 1:08pm »
Доброго времени суток всем!Меня зовут Миша,мне 39 лет,я из России.У меня мастоцитоз,слава богу пока не системный.Кожа густо покрыта буровато-красными пятнами.Их становится со временем больше. В Росси большая проблема с даже с постановкой диагноза - я три года не знал что со мной происходит.Теперь диагноз я знаю,но мне от этого не легче - лечения моей болезни нет. Прошу помощи у людей,которые могут это сделать!
keugene44 Between 0 and 50 Posts! (I'm new to posting) member is offline
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Re: Language Translation Supporters « Reply #8 on Jun 15, 2009, 7:12am »
Yes, it's Russian. He writes his name is Mike, he is 39, he is from Russia. He's ailing from mastocytosis. His skin is covered with brownish-red spots. As time goes by, they grow in number. There is a big problem in Russia even with making diagnosis - for 3 years he didn't know what was happening to him. He knows the diagnosis now but he is none the better for it - the deease is incurable. He seeks help from people who can help
Re: Language Translation Supporters « Reply #9 on Jun 15, 2009, 8:10am »
Thanks Keugene. I really hope Mike finds some answers to take his doctors on this forum. I don't know Russian language, but if there is anything specific he needs answered, please let me know and I'll find the appropriate research articles.
Thanks so much for joining. If it helps, masto patients worldwide struggle to find treatment, get it working properly for their individual case, and then to find and keep a doctor close to home. Worldwide, individuals and groups are working to raise awareness. Hopefully, it will help our friends in Russia and elsewhere.
keugene44 Between 0 and 50 Posts! (I'm new to posting) member is offline
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Re: Language Translation Supporters « Reply #10 on Jun 15, 2009, 9:28am »
as step one, I'd like to translate the list of foods allowed and restricted form THE DIET (or Guidelines) FOR MASTOCYTOSIS - it is partially done for him, then I'd like to post it here
Re: Language Translation Supporters « Reply #11 on Jun 15, 2009, 1:03pm »
Absolutely. Anything you want to translate and post please don't hesitate. We never know who will join and need the information. You're sort of leading on helping Russians, which is excellent.
Re: Language Translation Supporters « Reply #12 on Jun 15, 2009, 3:01pm »
Welcome Mike and Welcome Keugene! How wonderful that you both can be a part of us! We hope that through you, Keugene, that Mike will be able to find more help and understanding! As to the "Greek" comment, that is a joke that many of us who speak English will say of any other language, be it a spoken language, or even technical information like science terms or mathematics, or any kind of information that seems strange and difficult to understand is called. So much of the medical terminology, even though it is in English, we will also call "Greek" for its incomprehensible to us! I've often told my doctors, when speaking in Portuguese with them, for I live in Brazil and speak two languages, I've asked them to translate the "Greek" for me and they laugh and call it Greek too!! So, it's also a joke here in Brazil and in Portuguese!!! So, from now on, you can call English "Greek" and all of the medical info "Greek" too, until you learn to be more "fluent" in the "Greek"!
Mike, we who have this crazy disease fully understand not only what ails you, but how hard it is to live with it! Obviously you are a fighter and that's wonderful! We are too. Please do not hesitate to ask any questions you feel you need. We have men who are a part of this group and even though the women are more "chatty" and speak up, the men also will take part and all you need to do is pose your questions. There are times that only a man can answer another man's questions, but as to living and understanding how this disease works, that is something we all are learning as time goes on. Ask away, Buddy, and we'll do what we can to help you learn to make life a bit easier!
keugene44 Between 0 and 50 Posts! (I'm new to posting) member is offline
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Re: Language Translation Supporters « Reply #13 on Jun 15, 2009, 11:27pm »
Миша, мы, у кого тоже эта страшная болезнь, полностью понимаем не только что мучит тебя, но и как трудно жить с этим. ты явно боец, и это замечательно. мы тоже. пожалуйста, задавай любые вопросы. в этой группе есть мужчины, и хотя женщины более разговорчивы и высказываются чаще, мужчины тоже принимают участие. все что нужно - просто задать вопрос. бывают моменты, когда только мучина может ответить на вопрос другого мужчины - как жить и как понять что это за болезнь - вот чем мы занимаемся. задавай вопросы, приятель, поможем чем можем, чтобы сделать жизнь немного легче
afftobus Between 0 and 50 Posts! (I'm new to posting) member is offline
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Re: Language Translation Supporters « Reply #14 on Jun 16, 2009, 2:39am »
To lisathuler : Спасибо,шутку с греческим языком мы поняли!По русски мы бы сказали глядя на незнакомые буквы - китайская грамота,или абракадабра. Так же спасибо за добрые слова и желание помочь!Но в России очень сложно найти понимание в глазах врачей - у нас мастоцитоз является загадочной болезнью,многие врачи впервые узнают об существовании мастоцитоза,не говоря уже об его лечении.Тем более все крупные специалисты,могущи е помочь,находятся в Москве - столице России.И,скорее всего,лечение или попытка лечения будут стоить больших денег,которых у меня нет. Я живу в провинциальной Костроме,у нас здесь специалистов по мастоцитозу нет. Кстати,вы всё ещё думаете,что в России по улицам ходят медведи с балалайками?
afftobus Between 0 and 50 Posts! (I'm new to posting) member is offline
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Re: Language Translation Supporters « Reply #15 on Jun 16, 2009, 3:15am »
To lisathuler: with the Greek language, we understood the joke! In Russian, when looking at unfamiliar characters, one would say "Chinese puzzle", or "abracadabra". Also thanks for kind words and desire to help! But it is very difficult to find understanding in Russia in the opinion of doctors - mastocytosis is a mysterious illness here, many doctors get to know about the existence of mastocytosis for the first time, let alone its treatment. All the more, all prominent experts who can help are in Moscow - the capital of Russia. And, most likely, treatment or treatment attempt will cost much money that I don't have. I live in provincial Kostroma, there are no mastocytosis experts here. By the way, all of you still think that bears with balalaikas go on streets in Russia?
Re: Language Translation Supporters « Reply #16 on Jun 16, 2009, 6:11am »
I'm glad you enjoyed the joke! Chinese puzzle! That's a good one!!!
Mike, believe it or not, your challenges with doctors is international! I live only 2 hours outside of Rio de Janeiro and nobody has heard of mastocytosis! A couple of my doctors remember hearing about it in med school, but very few have ever seen a case. I saw several doctors in Rio who'd never seen a case but had remembered about it and others who looked at me as though I was a Martian, only a Red one and not Green! hahaha! Rio is a huge city! And, my case is challenging doctors who have seen it before to the point that they are telling me that I no longer can stay in Brasil but must return to the United States and seek out Dr Metcalfe at the National Instutute of Health, the government's research facilities. Being an American I thankfully have that option, but I don't know that I have the money to get there! Yet, I've gone as far as they can take me here in Brazil because there are no higher authorities on this disease. I'm already working with one of the highest!!! All of my exams point to mastocytosis, but we can not find it and we can not get all of the exams that can confirm it because there are exams that are not being done in Brazil. The prostaglandins test is not available and perhaps I've managed to find it but only with researchers! So I fully understand your dilema, but this happens in the US and Canada as well. Brenda can tell you her troubles, but other patients like Brenda have said that they too have had problems because they don't live near research centers or study centers and therefore are forced to spend money they don't have travelling to find higher authorities too! This is the problem of having a rare disease - the doctors who know about it are more rare than the patients themselves and that says a great deal! Yet, this is where you need to invest time and energy in learning about the disease so that you can take better care of yourself. Remember, the important thing about this disease is avoiding the triggers. The more you can avoid them, the calmer your system stays and that's good. Unless you show that you have the aggressive form of the disease, there is no treatment other than prophylaxis. Prophylaxis, in case you don't know, is that of treating only the symptoms. The only real treatment for masto is chemotherapy and that is only done with those patients who have the aggressive form and are already dying because of the disease, and even then, the doctors have not really been able to sucessfully treat these patients for they've just not been able to discover a really good treatment for these patients. The masto has become a cancer for them, and only some cases are they finding adequate treatment. Fortunately very few mast patients have the aggressive form and most of us can live their normal life spans, the patient won't die from the disease itself - at least this is what the researchers believe. This is why we all just take medications like Ketotifen and antihistamines, to keep our symptoms under control and try to give us a somewhat normal life. And this is what we all go through no matter where we live in the world - confused doctors is the norm for us all!
I LOVE BALALAIKA!!!!! I had the priveldge of seeing the Russian Balalaika orquestra in Washington DC when I was a girl, back in the 1970s! Due to the Cold War, it was a once in a lifetime presentation and I was fortunate to see it. I have a record of this orquestra and my favorite song is Moon Over Moscow~!!! The Balalaika is one of my very favorite instruments - Really! Yet, I can tell you I never thought I'd see a bear walking down ANY street be it in Russia or Canada playing a Balalaika!!! Yet, I'll bet you think that all Canadians have an igloo in their back yard with a Moose parked in their driveway! I always thought that anyway! haahahah! Well, I've got to go, the grass on the roof of my hut needs adjusting and my dirt floor needs a good sweeping and then I'll go lie down in my hammock, for here in the middle of the Amazon forest, the monkeys get a bit abusive if you don't keep the place tidy!! And the Tucans really put up a fuss! Oh, by the way, I live in a more "modern" Brazil, we figured out how to do digital jungle drums and so it's not so hard to send these messages anymore! hahahahahahahahahaha! Oops, watch out, here comes a head hunter, you better duck before you lose yours!hahahahahahahaha!
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