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

我是来自中国上海的一位妈妈,因家人给宝宝误食了蚕豆而引发了急性溶血,送医后,才得知儿子患有蚕豆病。儿子前后住院了一周时间,期间换了血,花费1万多人民币;花钱多少不说,我儿子遭受了不少的痛苦。我们全家人也非常的紧张害怕,生怕孩子以后再会出什么事!很感激您分享的知识,对我们这些迷茫的家长,是一个极大的帮助,但愿所有蚕豆病的悲剧不会再发生!

~杨

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

我要再次说声感谢,因为你提供的信息让我们的生命获得重生,也让生活充满了希望。自从4年前,我们对女儿的饮食做了调整后,她的生活就改变了很多,变得积极,健康起来。最近,她在考虑单独去某个地方的可实施性,不准备与我们同往 (我们重复检查了所有的材料,她检查后,我们又检查了一遍)。她说:“我必须得要这个清单!”。如果生活中没有这份清单,我们都不知道该怎么办!谢谢你!

~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

本来很多关节都很疼痛,但当我停止正在吃的食物后,就不再疼了。而且以前我很难举起225磅的东西,但是自从饮食习惯改变后,现在感觉好多了。我的生活真的发生了很大的改变。太谢谢你了。

~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

因为我儿子患了溶血性贫血,所以过去六年来他一直头痛。在过去的几个月里,我们不再吃任何禁忌食品(而医生说只需要保证不吃蚕豆即可)。从那以后,他不再头痛!!我们每日也服用NAC,这极大的缓解了我的疲劳,也减轻了儿子的头痛症状。

~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

我只是想让你知道,在你的帮助下,通过服用有机食品,观查致病因素,增加消耗抗氧化剂,以及补充抗氧化剂,并辅以具体的脊椎按摩,我儿子从平均8个红细胞的量增加到正常的12-13个。现在他15岁了,打棒球,篮球,到处跑,充满了活力。感谢你的帮助,你让我小孩的生活发生了很大的变化。加油!戴尔博士。

~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

根据戴尔在他网站上教我们的,我在过去两周,一直服用松树皮和烟酸(无冲洗),维生素 B6和叶酸等;现在我可以睡得很好,而且精力也好多了。还有我确实注意到的一点是我的呼吸更深,更轻松了。嗯,我可能是或可能不是G6PD缺乏症患者,但是这些补充剂可能让我生活的更好,也带给了我妹妹和她儿子(G6PD缺乏症患者)新的生活。戴尔,谢谢你的网站为我们提供的帮助。

~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

戴尔的书是最好的。我们离不开它。它的食谱都是我们的最爱。戴尔给我们所有人带来了福音。在他的网站上可以得到这本书。

~琳达

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

~Rosina

谢谢你,戴尔。谢谢你对我们的帮助,我们对你的感激无以言表。上帝保佑你。诚挚的问候送给你。

~马伊萨

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

我要再次感谢你创建了这个美妙的网站,我觉得它解决了我生命中很长一段时间的一个大困惑。因为我一直觉得不舒服,但是从来不知道我患了G6PD缺乏症!!最好的爱和祝福送给你。

~罗西

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

我跟你说过我会跟进我儿子的治疗进展。今年 9 月,JT出现了溶血迹象,我们把他带到血液科医生那里查血(我们10年都没查过血了)。谢天谢地,他的血液显示他并没有溶血现象;但是,他有轻微的黄疸,尿液是冰红茶的颜色(血液科医生告诉我们他患了严重的G6PDD - 0.7)。当我们知道JT在婴儿时期就已经是G6PDD患者时,医生只给我们列了一个简短的禁忌药物品清单(例如,磺胺类,樟脑丸和蚕豆)。自从我买了你的书,还经常浏览你的网站,我们就知道将禁忌药物品从JT饮食中剔除(我也是G6PDD患者)。也就是说,他的尿液颜色已恢复正常了,眼睛也不再泛黄。

我称颂我的神,因为他治愈了JT 的身体,因为他的智慧,理解和平和的心灵,因为你和这个网站!

~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

我们让女儿采纳了你们的建议。她有蚕豆病。这之后我们的生活发生了很大的变化,特别是在饮食方面,仅仅通过改变女儿的饮食,她的生活改变很大 — 她变得如此健康和快乐。

~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

我们的儿子是G6PD缺乏症患者,所以我们全家选择按照儿子的饮食来生活……经过几个小时阅读了解到了添加剂和垃圾食品,就是把一些所谓的新鲜食品加工一下,然后添加到里面去。我们已经完全改变了之前的饮食习惯。我们坚信儿子特里沃不能吃的所有这些东西,对其他人身体也是有害的。我敢说,我开始认为这对我们来说是件好事情,它让我们见识到了一种新的生活和饮食方式。

我们像我们的祖辈那样,用苏打粉代替牙膏。也用温和的肥皂代替洗发水,橄榄油,葡萄籽油或最好的椰子油就是最好的护发素。我们用椰子油和苹果醋作驱蚊剂。真的不需要使用那种带有很多致命毒素的昂贵产品。在菲律宾,我们可以买到新鲜的可可豆,制作的巧克力比任何店子里卖的都好吃多了。我们学习自己制作食物,每天的东西又健康,又实惠,虽然会花费很多时间,但是相对我们家人的健康来说,这一点都不算什么。我们会尽快买一本戴尔的书…

~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,我是第一次作母亲,有一个两个月大的儿子,他被诊断出患有G6PD缺乏症,作为妈妈,我想给他最好的照顾……我非常想了解他的饮食……关于未来在照顾宝宝的问题上,我有很多的想法……感谢上帝保佑!

~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

在儿子5个月大的时候,我们往全科医生那里跑了无数次,最后儿子被确诊为 G6PD缺乏症,而之前医生一直不这样认为。我知道作为三个孩子的母亲,当我的第三个孩子服用抗生素时,他承受着很大的病痛,我不是个好母亲,我不再给他吃抗生素。当他出现地中海贫血症苗头时,他并没有被检查出患了这种病,而地中海贫血协会帮助检查了他的身体状况,发现他并不是病症携带者,并帮我找了个协会为我提供咨询和帮助。儿子已经好几岁了,一直都以病魔作斗争。我现在的全科医生仍然不知道怎么治疗,大部分的全科医生甚至都没有听过这种病症。我们必须不断的提醒老师和老师助理需要注意我儿子的这个病情。最近一位老师助理用的樟脑丸让我的儿子病情加重,因为呼吸越来越困难,体育课也很难坚持上了。上帝保佑在中学的他和我。人们也越来越了解到这个病症。

~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,我刚刚将“The Support G6PD Awareness Cause”添加到我facebook 账户中。我目前是新生儿筛查中心的一名护士---中心位于菲律宾棉兰老岛。我每天都和G6PD打交道。我只想说,我很高兴你把这作为一个病例来研究,因为这种疾病现在变得越来越多了,尤其是在菲律宾。多保重,让这把火燃烧的更旺:)带来更多能量。

~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

我是一位新生儿ICU护士,您的网站是对我及我的儿子和我的病人非常有益。非常感谢您!

~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

谢谢戴尔、奥甘度及所有为此奉献的人们。你们真正帮助了像我这样孩子患有G6PD缺乏症的父母。我还记得当初医生告诉我,我的孩子有不足之处时,我顿时惊慌失措,不知道要做什么,不敢相信,这种事怎么会发生在自己身边。所有的医生都告诉我,因为我生活在疟疾流行地区,所以要杜绝伯氨喹。可悲的是,我想她们只知道这些。我想知道的更多,想要获得更多的信息,值得庆幸的是,我看到了这个网站,谢谢你们做的善事。感激上帝,我的女儿再过几天就两岁了。愿上帝保佑你们!

~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症、 懒惰甚至更糟糕标签的病人之一......每次我几乎都要哭着让医生检查一下我和我儿子的身体,因为一些感染让我们很不舒服。我不了解这些慢性微溶血和它们对整个身体的破坏性影响。通过这些信息,我现在终于能和我儿子的学校老师谈一谈儿子的慢性疲劳病症,可能也可以说服我的医生聆听我的想法,而不是把我当成一个疯子。

~匿名

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

~Anonymous

谢谢你,谢谢大家,谢谢奥甘度博士,戴尔和每个人,感谢你们与我们分享你们的知识。

~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

我很高兴发现了这个网站,也很宽慰地知道我们并不孤单;现在,随着我找到所需的所有信息,我更加确信我在将来会收获更多。我也可以尝试向周围的人解释,我们并非偷懒 (在工作或在学校)。当我们感觉不舒服时,确实需要多休息。我们确实病了,虽然它通常不是头不舒服,但病痛确是真实的。

我终于可以抬头挺胸的说:我并不是装病,而是真的病了,不是疯了!!!谢谢你的支持!

~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

我知道我以前这样做过,但我要感谢戴尔创建了这个网站,感谢奥甘度博士在这里和我们分享的所有经验...感谢大家,让我度过了美好的一天:今天我和儿子学校校长和学校医疗协调员(我希望你是这样表达的)碰了个面,向他们解释了我儿子的身体状况。这是我第一次可以以这种方式来解释,让每个人了解到我儿子为什么会生病,为什么一直都感觉很疲惫。这样他们看着儿子的时候,和以前不太一样了,不是以猜疑,而是以理解的方式看待,他们会照看他,也尽力帮助他......真是让人欣慰,这是我第一次感受到了理解。我和我的医生就没有这样的好运气了,但是我也不再绝望,我知道,如何让我们保持健康。下个月,我们要去见一位特别的医生,一位分子矫正医师将会为我们查血,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

戴尔,谢谢你对食物的建议。我儿子醒了,又在踢。我炖了鸡汤,做了石榴汁,现在我只喂他健康的食物(也有很多红肉)。谢谢你提供的好建议。希望你一切都好。

~一位很开心的妈妈

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,谢谢这本书,我真的很感激它! 我八个月大的小宝宝最近被诊断患了G6PD,我在网上搜索信息,发现了你的网站。首先,我得说它真的是项伟大的工作!!!很高兴知道我们并不孤单,是有人愿意花时间来帮助我们面对这种疾病。非常感谢。

~安德鲁

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

谢谢你对我们病情的关心。我真的感觉到在刚刚进入你的网站后,我了解了我的病况。上帝保佑你,以及你所为我们做的一切努力。

~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

完全赞同戴尔。我们不应该只是盲目地遵循医嘱,因为就我儿子的情况,他原来很容易生病,但直到我们改变了他的饮食习惯,才知道是什么原因导致的这一状况...

~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

这个小组内大家在讨论饮食和补充剂,这大大改善了我儿子的病情。一定要让你的医生了解症状,请不要接受“再看吧”的观点。

~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

自从我发现你的网站,我就一直对饮食很谨慎,会阅读所有的标签,但我必须说,现在我感觉好多了,我精力变得更好了,一点都不像有90多岁的人...... 也许这可以帮助那些不知道遵循饮食是何等重要的人。它值得一试,最后你可以学会健康饮食!

~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,我的儿子10月份就1岁了,出生时经测试,他被诊断为g6pd。在我们出院前,他输过血,我们被告知要避免某些食物和药物。但我很幸运,遇到一名医生,他告诉我,所给清单并不包含我所需要的全部信息,并让我参考这个网站。我用google 搜索,发现了这个网站,那里的很多人每天交流时都很热心。因为我努力祈祷,而且努力避免所有的致病因素,我儿子现在康复了,并且没有复发。

~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

如果我没有发现这个小组,我3岁的儿子可能还在病着。当我试着避免所有的致病因素和禁忌药物时,儿子就变得更加健康和活跃了。我们确实是孩子的守护者,我们应该做对他们最好的事情。

感谢这个小组,特别是感谢戴尔,无私的教会我们如何妥善处理我们的健康状况,让我们宝贵的孩子身体健康至今。

~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

发现这个网站本就是你能做的最好的事情。不幸的是,对于我们和孩子来说,医生似乎想要淡化我们家长似乎已经寻找到的有关病情的一些明确方向要点。你应该花时间通读这整个网站,尽可能的尝试并遵循饮食上的限制和药品禁忌列表。戴尔和许多其他对这个网站的贡献者一直与这种病情打交道,总是时时准备帮助我们家长或病人。如果你有任何问题,可以直接咨询,你可能或者绝对会从全球某个地方某个人那里得到回复。你将会像我一样明白,在处理这种状况时,你并非孤军奋战。

~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

谢谢你的支持。当我和妻子说我们的宝宝可以正常健康的成长时,她现在终于平静了下来。上帝保佑你们…

~匿名

待续......