患者感言

I am a mommy from Shanghai. My baby got acute hemolysis because of eating broad beans by mistake and it was then we found him with favism after sending him to the hospital. During the one week he lived in hospital, he did the exchange blood transition which cost about over 10,000 yuan. It was not how much money that mattered, the suffering he went through did. And our whole family were nervous and worried if we might lose him forever or something happened to him later on! Thank you for your sharing. It is a great help to us, the confused and desperate parents. I hope that tragedies of favism do not happen any more!

~Yang

我是來自中國上海的一位媽媽,因家人給寶寶誤食了蠶豆而引發了急性溶血,送醫后,才得知兒子患有蠶豆病。兒子前后住院了一周時間,期間換了血,花費1萬多人民幣;花錢多少不說,我兒子遭受了不少的痛苦。我們全家人也非常的緊張害怕,生怕孩子以后再會出什么事!很感激您分享的知識,對我們這些迷茫的家長,是一個極大的幫助,但愿所有蠶豆病的悲劇不會再發生!

~楊

I’ll also say thanks again, the information you provide has been life saving and affirming. Since changing our daughter’s diet almost 4 years ago, her life has changed so much, she is active and healthy. Recently when she was contemplating the possibility of being somewhere without her parents (we double check all ingredients - she checks then we check) she said – but I’d have to have THE LIST! What would her life be without the list? Thanks

~Stacy

我要再次說聲感謝,因為你提供的信息讓我們的生命獲得重生,也讓生活充滿了希望。自從4年前,我們對女兒的飲食做了調整后,她的生活就改變了很多,變得積極,健康起來。最近,她在考慮單獨去某個地方的可實施性,不準備與我們同往 (我們重復檢查了所有的材料,她檢查后,我們又檢查了一遍)。她說:“我必須得要這個清單!”。如果生活中沒有這份清單,我們都不知道該怎么辦!謝謝你!

~斯泰西

Had a lot of joint pain, after I stopped eating the foods to avoid it has stopped, my workouts have changed it was getting hard to bench 225 after diet change go 4 reps, big change THANK YOU SO MUCH

~Anonymous

本來很多關節都很疼痛,但當我停止正在吃的食物后,就不再疼了。而且以前我很難舉起225磅的東西,但是自從飲食習慣改變后,現在感覺好多了。我的生活真的發生了很大的改變。太謝謝你了。

~匿名

My son has had terrible headaches for the last 6 yrs since he had a hemolytic crisis. We have cut out all the contraindicated foods (Drs told us only to avoid fava beans) for the last few months and since then he has had no headaches!! We also take NAC daily which helps a lot especially with my fatigue and his behaviour.

~Anna

因為我兒子患了溶血性貧血,所以過去六年來他一直頭痛。在過去的幾個月里,我們不再吃任何禁忌食品(而醫生說只需要保證不吃蠶豆即可)。從那以后,他不再頭痛!!我們每日也服用NAC,這極大的緩解了我的疲勞,也減輕了兒子的頭痛癥狀。

~安娜

I just wanted you to know that with your help in reducing oxidative stress through organic food, watching triggers, increasing antioxidant consumption and supplementation in antioxidants as well as specific chiropractic care my son has gone from averaging 8 rbc to a normal 12-13. He is now 15 plays baseball, basketball and runs around full of vitality. Thanks for your help and you have made a huge difference in a child’s life. Way to go!! Dr. Dean

~Anonymous

我只是想讓你知道,在你的幫助下,通過服用有機食品,觀查致病因素,增加消耗抗氧化劑,以及補充抗氧化劑,并輔以具體的脊椎按摩,我兒子從平均8個紅細胞的量增加到正常的12-13個。現在他15歲了,打棒球,籃球,到處跑,充滿了活力。感謝你的幫助,你讓我小孩的生活發生了很大的變化。加油!戴爾博士。

~匿名

At the suggestion of what Dale teaches us at his website, I have been taking Pine Bark and Niacin( No flush), Vitamin B6, folic acid, etc. for the past two weeks; I am already sleeping better and having more energy. One thing I really notice is that my breathing is deeper and more relaxed. Well, I may or may not have G6PD deficiency, but these supplements may just give me a better life, and to my sister and her son(who is G6PD deficient) a new life. Thank you Dale for providing your help with your website.

~Sui

根據戴爾在他網站上教我們的,我在過去兩周,一直服用松樹皮和煙酸(無沖洗),維生素 B6和葉酸等;現在我可以睡得很好,而且精力也好多了。還有我確實注意到的一點是我的呼吸更深,更輕松了。嗯,我可能是或可能不是G6PD缺乏癥患者,但是這些補充劑可能讓我生活的更好,也帶給了我妹妹和她兒子(G6PD缺乏癥患者)新的生活。戴爾,謝謝你的網站為我們提供的幫助。

~隋

dales book is the best. We live by it. The recipes r now all our favorites... dale is a blessing to us all. Get the book on his site.

~Lynda

戴爾的書是最好的。我們離不開它。它的食譜都是我們的最愛。戴爾給我們所有人帶來了福音。在他的網站上可以得到這本書。

~琳達

Thank you Dale. I can’t express how much we are benefiting from all you can share with us. God Bless. Best regards.

~Rosina

謝謝你,戴爾。謝謝你對我們的幫助,我們對你的感激無以言表。上帝保佑你。誠摯的問候送給你。

~馬伊薩

I want to thank you again for creating this wonderful website, I feel it has solved a big mystery that I’ve had life long, since I have always felt unwell but never knew I had G6PD deficiency! Love and blessings!

~Rosina

我要再次感謝你創建了這個美妙的網站,我覺得它解決了我生命中很長一段時間的一個大困惑。因為我一直覺得不舒服,但是從來不知道我患了G6PD缺乏癥!!最好的愛和祝福送給你。

~羅西

I told you I would follow up with my son’s healing progress. This past September, JT was showing signs of hemolysis so we took him to the hematolgist to have his blood checked (we hadn’t been in 10 years). Thankfully his blood did not indicate hemolysis; however, he was slightly jaundice and his urine was the color of ice tea (Hematologist told us he was severely G6PDD - 0.7). When we were told JT was G6PDD as an infant, we were only give a short list of contraindicated items (i.e., sulfa, mothballs and fava beans). Since I bought your book and constantly browsing this website, we’ve removed as much as we are aware from JT’s diet (as well as mine as I am G6PDD too) of the contraindicated items. That being said, his urine color has changed back to normal and his eyes are no longer yellow.

I praise Yahu my Elohim for the healing of JT’s body, for wisdom, understanding and a peace of mind, and for you and for this website!

~Anonymous

我跟你說過我會跟進我兒子的治療進展。今年 9 月,JT出現了溶血跡象,我們把他帶到血液科醫生那里查血(我們10年都沒查過血了)。謝天謝地,他的血液顯示他并沒有溶血現象;但是,他有輕微的黃疸,尿液是冰紅茶的顏色(血液科醫生告訴我們他患了嚴重的G6PDD - 0.7)。當我們知道JT在嬰兒時期就已經是G6PDD患者時,醫生只給我們列了一個簡短的禁忌藥物品清單(例如,磺胺類,樟腦丸和蠶豆)。自從我買了你的書,還經常瀏覽你的網站,我們就知道將禁忌藥物品從JT飲食中剔除(我也是G6PDD患者)。也就是說,他的尿液顏色已恢復正常了,眼睛也不再泛黃。

我稱頌我的神,因為他治愈了JT 的身體,因為他的智慧,理解和平和的心靈,因為你和這個網站!

~匿名

Our daughter is adopted. She has favism. It has made a big change in our life, particularly in what we eat, but changing her diet has made a huge change in her life - she is so much healthier and happier.

~Anonymous

我們讓女兒采納了你們的建議。她有蠶豆病。這之后我們的生活發生了很大的變化,特別是在飲食方面,僅僅通過改變女兒的飲食,她的生活改變很大 — 她變得如此健康和快樂。

~匿名

Our son is g6hp deficient so we have opted for the whole family to follow his diet.... After many hours reading about all the additives and junk put in almost all processed and some supposedly fresh foods. we have totally changed our diet as well. I firmly believe that almost all the things that our son Trevor can not have are also bad for everyone as well..Dare I say it, but I am starting to think this is a blessing more than anything as it has opened our eyes to a new way of living and eating.

We use baking soda instead of tooth paste like our great grandparents did. Also Mild soap for shampoo and olive oil, grape seed oil or best coconut oil make great hair conditioner. Our mosquito repellent is coconut oil and apple cider vinegar. Really there is no need for expensive products full of deadly toxins. In Philippines we can get fresh coco beans and make chocolate that is better than any shop brought stuff. We are learning to make treats and every day things that are healthy and really so inexpensive, the main cost is time but our family’s health is worth it. We will be getting Dales book as soon as we can...

~Anonymous

我們的兒子是G6PD缺乏癥患者,所以我們全家選擇按照兒子的飲食來生活……經過幾個小時閱讀了解到了添加劑和垃圾食品,就是把一些所謂的新鮮食品加工一下,然后添加到里面去。我們已經完全改變了之前的飲食習慣。我們堅信兒子特里沃不能吃的所有這些東西,對其他人身體也是有害的。我敢說,我開始認為這對我們來說是件好事情,它讓我們見識到了一種新的生活和飲食方式。

我們像我們的祖輩那樣,用蘇打粉代替牙膏。也用溫和的肥皂代替洗發水,橄欖油,葡萄籽油或最好的椰子油就是最好的護發素。我們用椰子油和蘋果醋作驅蚊劑。真的不需要使用那種帶有很多致命毒素的昂貴產品。在菲律賓,我們可以買到新鮮的可可豆,制作的巧克力比任何店子里賣的都好吃多了。我們學習自己制作食物,每天的東西又健康,又實惠,雖然會花費很多時間,但是相對我們家人的健康來說,這一點都不算什么。我們會盡快買一本戴爾的書…

~匿名

I’m a first time mother of 2 months old son and he has g6pd deficiency...I’m very much more aware of his diet … I have more ideas on how to take care of my baby in the future... thanks a lot and god bless!

~Anonymous

你好,我是第一次作母親,有一個兩個月大的兒子,他被診斷出患有G6PD缺乏癥,作為媽媽,我想給他最好的照顧……我非常想了解他的飲食……關于未來在照顧寶寶的問題上,我有很多的想法……感謝上帝保佑!

~匿名

My son was finally diagnosed with G6PD when he was around 5 months after countless trips to GP and doctors all of which didn’t listen. I knew as a mother of 3 my son being my 3rd that he was ill especially in a lot of pain when taking antibiotics but I was branded as a bad mother because I stopped giving them. He was missed diagnosed with thalassemia which he is only a trait the thalassemia society picked up that his condition was not the signs of a carrier and helped me find someone that I could consultant with in the society to help me. He is years old now its been a fight all along. My current gp still is not sure how to treat him and most gps haven’t heard of the condition. Teachers and teacher assistants constantly have to be reminded. A recent issue of which i picked up on was moth balls used by a teacher assistant made my son very ill and physical education is getting harder and harder with his breathing. God help him and me in secondary school. People have got to be more aware.

~Anonymous

在兒子5個月大的時候,我們往全科醫生那里跑了無數次,最后兒子被確診為 G6PD缺乏癥,而之前醫生一直不這樣認為。我知道作為三個孩子的母親,當我的第三個孩子服用抗生素時,他承受著很大的病痛,我不是個好母親,我不再給他吃抗生素。當他出現地中海貧血癥苗頭時,他并沒有被檢查出患了這種病,而地中海貧血協會幫助檢查了他的身體狀況,發現他并不是病癥攜帶者,并幫我找了個協會為我提供咨詢和幫助。兒子已經好幾歲了,一直都以病魔作斗爭。我現在的全科醫生仍然不知道怎么治療,大部分的全科醫生甚至都沒有聽過這種病癥。我們必須不斷的提醒老師和老師助理需要注意我兒子的這個病情。最近一位老師助理用的樟腦丸讓我的兒子病情加重,因為呼吸越來越困難,體育課也很難堅持上了。上帝保佑在中學的他和我。人們也越來越了解到這個病癥。

~匿名

Hi sir. I just recently added the Support G6PD Awareness Cause to my facebook account. I currently work as a nurse in the Newborn Screening Center- Mindanao here in the Philippines and I deal with G6PD patients all the time. I would just like to say that I am glad that you have made this as a cause because this disorder is becoming more rampant, esp. here in the Philippines. take care and Keep that fire burning :) More power.

~Anonymous

你好先生,我剛剛將“The Support G6PD Awareness Cause”添加到我facebook 賬戶中。我目前是新生兒篩查中心的一名護士---中心位于菲律賓棉蘭老島。我每天都和G6PD打交道。我只想說,我很高興你把這作為一個病例來研究,因為這種疾病現在變得越來越多了,尤其是在菲律賓。多保重,讓這把火燃燒的更旺:)帶來更多能量。

~匿名

I’m a neonatal ICU nurse your website is very much helpful for me, my son and my patients. Thank you very much!

~Anonymous

我是一位新生兒ICU護士,您的網站是對我及我的兒子和我的病人非常有益。非常感謝您!

~匿名

Hello all Many thanks to Dale, Dr O and all the good people who contribute to this group. It really has helped those parents who have kids with G6PD def, I remember my initial shock at being told my kid had the Deficiency. I panicked and had no clue what to do. All the Dr could say was since you live in a malaria prone area don’t take any of primaquine . Sadly I guess that was all she knew. I started trying to get more information and thankfully I saw this website. Thank you all for the good work you do. my baby girl turns 2 in a few days and I am so thankful to GOD. GOD bless you.

~Anonymous

謝謝戴爾、奧甘度及所有為此奉獻的人們。你們真正幫助了像我這樣孩子患有G6PD缺乏癥的父母。我還記得當初醫生告訴我,我的孩子有不足之處時,我頓時驚慌失措,不知道要做什么,不敢相信,這種事怎么會發生在自己身邊。所有的醫生都告訴我,因為我生活在瘧疾流行地區,所以要杜絕伯氨喹。可悲的是,我想她們只知道這些。我想知道的更多,想要獲得更多的信息,值得慶幸的是,我看到了這個網站,謝謝你們做的善事。感激上帝,我的女兒再過幾天就兩歲了。愿上帝保佑你們!

~匿名

I am one of those patients labeled hypochondriac, lazy and worse...I almost have to cry every time I need the doctor to check me or my son because of some infection that makes us feel just miserable, I didn’t know about these chronic micro hemolysis, and the devastating effect they have on our entire body, with this information I now can at last talk to my son’s school teachers about his chronic fatigue, and maybe convince my doctor to listen to me instead of dismissing me as a nutcase!!!

~Anonymous

我是那些被打上疑病癥、 懶惰甚至更糟糕標簽的病人之一......每次我幾乎都要哭著讓醫生檢查一下我和我兒子的身體,因為一些感染讓我們很不舒服。我不了解這些慢性微溶血和它們對整個身體的破壞性影響。通過這些信息,我現在終于能和我兒子的學校老師談一談兒子的慢性疲勞病癥,可能也可以說服我的醫生聆聽我的想法,而不是把我當成一個瘋子。

~匿名

Thank you, thank you, thank you all, Dr. Ogundu, Dale and everybody else who share their knowledge with us.

~Anonymous

謝謝你,謝謝大家,謝謝奧甘度博士,戴爾和每個人,感謝你們與我們分享你們的知識。

~匿名

I am happy to have found this site, and relieved to see that we are not alone in this; now, with all the information I already have found , and more I’m sure I will get in the future, I can try to explain to everybody around us that we are not lazy (at work or at school), and that we really need to rest a lot when we are feeling sick, and that we really get sick that often, it is not in our heads, it’s real.

I finally can stand up straight and say: I am not faking, I am sick, not crazy!!!! thank you for the support.

~Anonymous

我很高興發現了這個網站,也很寬慰地知道我們并不孤單;現在,隨著我找到所需的所有信息,我更加確信我在將來會收獲更多。我也可以嘗試向周圍的人解釋,我們并非偷懶 (在工作或在學校)。當我們感覺不舒服時,確實需要多休息。我們確實病了,雖然它通常不是頭不舒服,但病痛確是真實的。

我終于可以抬頭挺胸的說:我并不是裝病,而是真的病了,不是瘋了!!!謝謝你的支持!

~匿名

I know I did it before, but I’m going to thank Dale for this website, and dr. Orgundu for all the experience shared here with us... thanks to all that I had a great day: today I had a meeting at my son’s school with the headmaster and the school healthcare coordinator ( I hope you say it like this...), to explain about his condition, and for the first time I could explain it in such a manner that everybody understood why my son is sick and so tired all the time, they are looking at him in a different manner, with understanding not suspicion, and they are going to keep an eye on him, and try to help him as much as they can.... what a relief , I felt understood for the first time. I didn’t have the same luck with my doctor, but I don’t despair anymore, I know enough to keep us as healthy as possible, and next month we are going to a special doctor, an orthomolecular physician that will check our blood for just anything .

~Anonymous

我知道我以前這樣做過,但我要感謝戴爾創建了這個網站,感謝奧甘度博士在這里和我們分享的所有經驗...感謝大家,讓我度過了美好的一天:今天我和兒子學校校長和學校醫療協調員(我希望你是這樣表達的)碰了個面,向他們解釋了我兒子的身體狀況。這是我第一次可以以這種方式來解釋,讓每個人了解到我兒子為什么會生病,為什么一直都感覺很疲憊。這樣他們看著兒子的時候,和以前不太一樣了,不是以猜疑,而是以理解的方式看待,他們會照看他,也盡力幫助他......真是讓人欣慰,這是我第一次感受到了理解。我和我的醫生就沒有這樣的好運氣了,但是我也不再絕望,我知道,如何讓我們保持健康。下個月,我們要去見一位特別的醫生,一位分子矯正醫師將會為我們查血,以防有什么疾病。

~匿名

Dale, thanks for the food suggestions. My son is up and kicking again. I made the chicken stock and found pomegranate juice and I am feeding him only good food (lots of red meat as well) so THANK YOU for all the good advice. whishing you all the best.

~a very happy mother

戴爾,謝謝你對食物的建議。我兒子醒了,又在踢。我燉了雞湯,做了石榴汁,現在我只喂他健康的食物(也有很多紅肉)。謝謝你提供的好建議。希望你一切都好。

~一位很開心的媽媽

Hi thanks for the book, I really appreciate it! My 8 months old baby boy recently got diagnosed with G6PD and I was looking on the net for some info when I came across your site. First of all GREAT JOB!!!!! It’s nice to know we are not alone and there is someone who is willing to take time out to educate people on this disorder. Many thanks.

~Andrew

嗨,謝謝這本書,我真的很感激它! 我八個月大的小寶寶最近被診斷患了G6PD,我在網上搜索信息,發現了你的網站。首先,我得說它真的是項偉大的工作!!!很高興知道我們并不孤單,是有人愿意花時間來幫助我們面對這種疾病。非常感謝。

~安德魯

Thank you very much for the consideration you give to our case. I really feel that just now I can fully understand my case after I entered your website. God bless you and the hard work you do to help us.

~Anonymous

謝謝你對我們病情的關心。我真的感覺到在剛剛進入你的網站后,我了解了我的病況。上帝保佑你,以及你所為我們做的一切努力。

~匿名

Totally agree with Dale. We should not just blindly follow doctor’s order because in my son’s case, it turns out he easily got sick and we didn’t know why until we changed his diet...

~Anonymous

完全贊同戴爾。我們不應該只是盲目地遵循醫囑,因為就我兒子的情況,他原來很容易生病,但直到我們改變了他的飲食習慣,才知道是什么原因導致的這一狀況...

~匿名

The diet and the things people have discussed with supplements in this group has helped my son tremendously. Definitely let your doctor know about the symptoms and please do not accept “let’s wait and see”.

~Anonymous

這個小組內大家在討論飲食和補充劑,這大大改善了我兒子的病情。一定要讓你的醫生了解癥狀,請不要接受“再看吧”的觀點。

~匿名

Since I discovered your site, I have been cautious with what we eat, reading all the labels, and I must say, I feel better, I have more energy, don’t feel like a 90 years old anymore...maybe this can help those who aren’t sure how important it is to follow a diet, it’s worth trying, at the end you learn to eat healthy!

~Anonymous

自從我發現你的網站,我就一直對飲食很謹慎,會閱讀所有的標簽,但我必須說,現在我感覺好多了,我精力變得更好了,一點都不像有90多歲的人...... 也許這可以幫助那些不知道遵循飲食是何等重要的人。它值得一試,最后你可以學會健康飲食!

~匿名

Ok, my son will be 1 yr in October, he was tested to be positive to g6pd at birth, and he had blood transfusion before we were discharged and we were told to avoid certain foods and drugs. But am so lucky to have met a doctor who told me that the list I was given will not give me the full info I needed and referred me to the web. I googled and found this site where so many people have been helpful on daily basis. My son is ok, no reaction to anything cos I am praying hard and as well trying hard to avoid any trigger.

~Anonymous

好吧,我的兒子10月份就1歲了,出生時經測試,他被診斷為g6pd。在我們出院前,他輸過血,我們被告知要避免某些食物和藥物。但我很幸運,遇到一名醫生,他告訴我,所給清單并不包含我所需要的全部信息,并讓我參考這個網站。我用google 搜索,發現了這個網站,那里的很多人每天交流時都很熱心。因為我努力祈禱,而且努力避免所有的致病因素,我兒子現在康復了,并且沒有復發。

~匿名

If I hadn’t found this group probably my son who is now 3 yrs old would have been sick always. When I tried to avoid all the triggers and contraindicated medicines, He became more healthy and active.We are really the caretakers of our children and we should do what will be the best for them.

Thanks to the Group here especially to Dale who unselfishly feed us with knowledge to properly handle our health situation and make our precious child healthy as ever.

~Anonymous

如果我沒有發現這個小組,我3歲的兒子可能還在病著。當我試著避免所有的致病因素和禁忌藥物時,兒子就變得更加健康和活躍了。我們確實是孩子的守護者,我們應該做對他們最好的事情。

感謝這個小組,特別是感謝戴爾,無私的教會我們如何妥善處理我們的健康狀況,讓我們寶貴的孩子身體健康至今。

~匿名

Having found this website is the best thing you could have done. Unfortunately for us and our children the doctors seem to/want to play down our condition to a point where we parents seem to flounder for some clear direction. You should spend time and read through this entire website and try and follow dietary restrictions and the medicine contra list as far as possible. Dale and many other contributors to this site have lived with this condition and are always ready to help us parents/patients. Do not hesitate to ask any questions you may have as you will probably/definitely get a response from someone somewhere around the globe. You will as I did realize that you are not alone in dealing with this condition.

~Anonymous

發現這個網站本就是你能做的最好的事情。不幸的是,對于我們和孩子來說,醫生似乎想要淡化我們家長似乎已經尋找到的有關病情的一些明確方向要點。你應該花時間通讀這整個網站,盡可能的嘗試并遵循飲食上的限制和藥品禁忌列表。戴爾和許多其他對這個網站的貢獻者一直與這種病情打交道,總是時時準備幫助我們家長或病人。如果你有任何問題,可以直接咨詢,你可能或者絕對會從全球某個地方某個人那里得到回復。你將會像我一樣明白,在處理這種狀況時,你并非孤軍奮戰。

~匿名

Thanks for the support, now my wife is calming down after i give her an explanation that our baby can be grow normally and healthy. God Bless You all.

~Anonymous

謝謝你的支持。當我和妻子說我們的寶寶可以正常健康的成長時,她現在終于平靜了下來。上帝保佑你們…

~匿名

待續......
pk10怎么看走势选码