随笔-罕见病不罕见
今年2月29日是国际罕见病日。第一次罕见病日是在2009年2月29日由欧洲罕见病组织发起，定在那天是因为2月29日比较罕见，4年才有一次。之后罕见病日被美国，中国等多国接受，决定在每年2月的最后一天举办，至今末间断，现有100多个国家参与，一定程度唤起了人们对罕见病的关注，认识和理解。
罕见病顾名思义是极其少见的疾病，但各国和地区诊断标准不同，世界卫生组织认为千分之0.65到千分之一的患病率即为罕见病，欧洲是每2000人少于1人患病是罕见病，而美国是全美少于2万患病者即为罕见病。以前以为罕见病离我们很遥远，自从有我熟知的人两年前得了罕见病，到处求医，多次误诊，最近才得以确诊后，同时注意到朋友的朋友也有患罕病，使我认识到罕见病其实就在我们附近，就在我们周围，也使我对罕见病的认识有进一步改观。现在全世界己经发现的罕见病有6千多种，而且数量在不断增加，全世界有3亿多人患有各种各样的罕见病，每个人一生中有5%-6%的机会会患罕见病，如果以受罕见病影响的家庭来算，比率就更高了。罕见病作为个体是比较罕见，但作为一个整体却不容小觑，可谓罕见病并不罕见。
罕见病有72%是基因或遗传病，其它也可能是传染，过敏，环境，细胞增生等因素引起，其中基因遗传病者有70%从童年就患病，常有慢性令人痛苦症状，且症状因病而异，甚至同疾病也因人而异，很容易引起误诊及延误治疗。长期患病，大部分罕见病无特效药造成被忽略且死亡率高的特点。随着对罕见病的认识提高，加上医学研究及科技的日新月异，过去认为罕见的病及症状，更能被正确地诊断，得到更正确的治疗，相信罕见病预防，诊断及治疗的明天会更好。
My husband loves them. He say's they are extremely comfortable
- Liberia
Been getting these forever, love the fit, 13 4E. Perfect, comfortable.
- Singapore
I have wide feet and ordered extra wide. They fit great.The sneaker looks fine too.
- Switzerland
Finally able to order my correct size without getting a size bigger to get the width I need.
- Switzerland
Comfortable, good sole and inner sole. Have worn this make for several years -- hope they keep making them.
- Switzerland
I'm a truck driver climbing up and down and inside trailers shoes perform well no falling apart yet so I'd buy them again
- Switzerland
Always a favorite work shoe. Excellent arch support. Could have gone a half size larger from what the foot size gadget at the shoe store read.
- Liberia
Tired of going to the store to NOT find the correct size of shoe in the type I wanted. This shoe was exactly what I was looking for - and I got it in 2 days!!
- Singapore
I wear size 8 shoe -orderd size 8 -normal width .I m 5'7" -130 lbs . They fit perfect . Little snug at first as are all new shoes . Hope this helps with concerning ordering a size larger issue .
- Switzerland
This is my third pair of these shoes. I have wide feet so I have a hard time finding good shoes that fit well. These work great and each pair lasts me at least twice as long as previous shoes I have tried. They are very comfortable.
- Switzerland
2024-01-12 08:58:37--
The size design is also appropriate, the installation and disassembly are very simple and effortless, and the price is ok ~ the quality is good.
2024-01-12 08:57:10--
I bought it for running. It's stable, looks pretty good, workmanship is good, earphones are connected quickly, connection is stable, sound quality is OK, recommend it
2024-01-12 08:51:13--
Very good pair size 43 Perfect I recommend. Lyonnais
2024-01-12 08:50:58--
Very unsatisfied
2024-01-12 08:46:30--
Fantastic little slides buy one size up though
2024-01-12 08:46:11--
Came in excellent time. Very happy and will buy again
2024-01-12 08:46:05--
Corresponds to the photo. was very firmly packed
2024-01-12 08:45:53--
Really quick. Perfect condition. Discription as stated
2024-01-04 18:59:22--
at the top nothing to say even the seller is attentive 👍👍
2024-01-04 18:57:15--
Very unsatisfied
2024-01-04 18:56:38--
Shoes took 2 weeks to arrive, size is 2 sizes too big from what I ordered… size tag has a Jordan logo instead of the Nike one smh… shoes aren’t even Jordan’s
2024-01-04 18:55:38--
Can tell it’s fake but it’s a fake so lol
2024-01-04 18:54:39--
Took a while
2024-01-04 18:51:02--
thank you very much
2024-01-04 18:50:32--
perfect and as expected
2024-01-04 18:49:37--
I b waiting for 3 months it’s soo long
2024-01-04 18:48:42--
absolutely brilliant. will buy again fo sho
2024-01-04 18:48:09--
Super nice! Looks amazing and quality is great!
2024-01-04 18:46:08--
This seller is my favorite for sneakers. Fast shipping and she's been A1
2024-01-04 18:44:02--
Good. Didn’t come with a box tho
2024-01-04 18:42:43--
Honestly, the best replica on the market, all in promised, color, size and structure ... Nothing to complain about, I'm satisfied with my product, buy without fear, unique thing that was desired was the delivery time, but it was already If you wait, and the box came damaged but I don't care ... approved 🫶🏻
2024-01-04 18:41:16--
Great sliders, a little small so order larger size to compensate. Have recommended to friends and have ordered more
2024-01-04 18:37:26--
Great product! My wife was so happy!
2024-01-04 18:36:15--
Great product. Fast shipping. Recommend !!
2024-01-04 18:35:48--
Very good quality. Item exactly as described
2024-01-04 18:35:35--
Very good quality. Item exactly as described
2024-01-04 18:34:31--
Thanks for the fast delivery of the store, very satisfied, recommended
2024-01-04 18:32:50--
Came in 2weeks! On first look they look amazing and with good quality. Gonna try them on later. For the price best you can get! Recomend! Thanks again! second time ordering from you seller! I hope that seller gonna think how can they ship shoes without damaging box. Box came really damaged. But thats not priority! Thanks again!
2024-01-04 18:32:42--
Package never arrived. Seller refused to provide any help. I would not recommend buying from them. If there is any issue they won’t provide any help and you will lose your money.
2024-01-04 09:22:21--
Quality is just super! Delivery fast,I advise all the seller
2024-01-04 09:22:01--
I like these glasses so much, they have a small face and good lighting effect.
2024-01-04 09:21:55--
Delivered to the UK inside of 10 days and shocked by how high quality the glasses are
2024-01-04 09:21:39--
Beautiful sunnies! Looks just like my official pair! Will definitely be buying another color soon!
2024-01-04 09:20:38--
This is my first time purchasing from DHgate. I was pleasantly surprised with my purchase. The glasses are a little lighter in weight than I was expecting but for the price you can’t beat it. I would recommend this seller. The glasses came just as pictured with a nice box.
2024-01-04 09:19:41--
delivery more expensive than the shoe itself, and very very small size
I am a small 44
I took a 45 to be sure, and it serves my feet
2024-01-04 09:18:33--
Easy somewhat quick!
2024-01-04 09:14:50--
perfect! just look at the pictures!
2024-01-04 09:13:43--
The photons crease really easily but they do look really nice.
2024-01-04 09:12:57--
I must say I was impressed! They feel great and look great! Took about 2 weeks to receive !
2024-01-04 09:09:08--
The seller and I had a good communication. The product fully meets the indications and expectations.
2024-01-04 09:07:41--
Beautiful handbag. Very satisfied. Gray and gold is not common so I love that it stands out! Great communication by seller!
2024-01-04 09:07:02--
Looks very cheap and fake
2024-01-04 09:04:52--
NOT A ROBOT! I absolutely love my bracelet. I wear it almost everyday and people are a bit jealous of my “van cleef” haha. it’s has the gold stamps on it and also has the exact same van cleef stamp attachment thingy on the lobster clamp. But, it doesn’t come with the van cleef box :(
2024-01-04 09:03:33--
I loveeee my shoes! Exactly like the real and so comfy. Going to order another colour very soon. Thanks again!
2024-01-04 09:03:32--
Good baby, quality bar drop, as described by the merchant no error, Courier boy delivery and fast
2024-01-04 09:03:19--
Good. Everything was exactly as described and i got more flavors than i was expecting overall extremely happy with the order
2024-01-04 09:02:35--
Excellent shoe. This is the third pair that I've bought I'm extremely satisfied with it. I'm sure that I'll buy more from this seller. Strongly recommend, I'm a legit buyer. Enjoy your future purchases!
2024-01-04 09:02:17--
The product itself is as described and is good for the price. But there are some problems with them like randomly disconnecting 100 times.
2024-01-04 09:00:32--
Good sound quality, very comfortable to wear, very satisfied
2024-01-04 08:58:33--
The sound quality is also very good, it is comfortable to wear, and the endurance is also good.
2024-01-04 08:57:17--
The headphones have beautiful appearance, exquisite workmanship, perfect details, good sound quality, good noise reduction effect, and good battery life.
2024-01-04 08:56:58--
Earphones are exquisite in appearance, not heavy in hand, soft in earmuffs, comfortable to wear, and have a good noise reduction effect, and white ones are not so easy to get dirty.
2024-01-04 00:07:29--
they look great. honestly i can’t tell a difference between them and real ones. and the sound quality is amazing to. took abt 12 days which is not bad but looking for faster delivery
2024-01-04 00:06:28--
Perfect 👌 Top
2024-01-04 00:05:51--
the quality is very poor
2024-01-04 00:05:36--
Total rip off. They only sent me half of my order and tried to say they sent all of my items but they didn’t!
2024-01-04 00:02:05--
Real review-
Took about 3 weeks and was stuck in transit
Then after it was stuck in transit for two weeks that’s when it moved pretty quick- only
Complaint the zipper is a little dented but can be fixed on your own
2024-01-04 00:01:56--
Super fast shipping. Got in about two weeks. Came with box and dust bag. Has a little bit of a smell to it but im sure will go away after being out. Love it tho has a great feal to it! I did notice when i was putting my cards in that the slots did tear a little to make them fit but its minor . Still very satisfied for the price
2024-01-04 00:00:44--
Absolutely beautiful! Super high quality and looks like the real thing. The leather is embossed perfectly. The print lines up. The leather smells good. The inside feels like suede. It’s honestly perfect. Thank you! I can’t wait for my next order to arrive!
2024-01-03 23:58:09--
Beautiful. Great seller!
Displaying 1 to 60 (of 813 reviews)
