怎么得怪病的都是穷人家孩子。

抛砖引玉，有医生出来了。我已经让我四川的朋友今天发出这个信息了。希望可以帮到这个小姑娘。

there is a drug for phase two clinical trial。 这个phase two 药孩子可以用吗？

MDintraining 发表评论于 2014-09-02 17:30:07

My diagnosis is the FOP. no specific treatment is available so far.

My diagnosis is the FOP. no specific treatment is available so far. However, there is a drug for phase two clinical trial. Dr. Kaplan at University of Pennsylvania is world expert for the disease. I happened work with him for a couple of years. He is the first scientist who found the gene. To find more information please go ***ifopa.org. or contact me directly at yangguanw@gmail***. I am currently an orthopedic surgeon in NYC.

这是基因变异引起的疾病，病因明确。暂时无药可治，有些是在实验中的新药没有批准。全世界一共700例确诊病例。有四川的朋友帮忙把我的判断发出去，家里不要到处跑了，白花钱。

现在世界上成了了一个FOP的组织，会及时发布新的进展，ifopa.org. 希望孩子可以坚持到有药的那一天。

FOP is caused by an autosomal dominant allele on chromosome 2q23-24。 A mutation in the gene ACVR1 (also known as activin-like kinase 2 [ALK-2]) is responsible for the disease。

进行性肌肉骨化症。这个现在没有什么医治办法。病人很痛苦，骨头越来越多，后期被完全固定住，只能卧床，一般死于呼吸衰竭。

治病比上学更重要吧？都6年过去了还不赶紧，现在就已经生活不能自理了，将来读了博士又能怎样？

看了很心痛，想想如果是我自己的女儿会多痛苦。想必她是身体营养极度不平衡， 列如缺钙，缺B 族维生素或她的身体由于长期营养不良而能吸收或利用B 族维生素，我的意见必须全方位做以下工作：1??：大量补三维B片（含B1，B6，B12 各 100mg毫克），2：补液体钙（不要以为乱长骨就是不缺钙，其实正相反是缺钙缺营养的表现），3：吃三七粉，熟吃两次（用开水或开鸡汤或煮鸡蛋红糖吃， 每次一小勺大概4克-5克。可补血增强体制免疫力促进身体吸收营养）。然后生吃一次（用温水冲服。可促进血液循环，去腐生津，逐渐清除身体的废物乱骨就是废物）。4：也是最重要的一点就是必须加强食物营养平衡，A：每天用芹菜，红萝卜，苹果，梨，草莓，橘子和皮一起，牛奶，生花生或核桃，猕猴桃或其他生的叶菜一起打成果汁，连渣一起喝完。B：吃好的新鲜的鱼肉猪肉牛羊肉补充蛋白质而三维B片帮助身体吸收蛋白质和营养神经，不要吃腌制或有防腐剂的任何肉或菜，方便面等...，另外， 每天吃一两次枸菊地黄丸补肝养肾并做适量运动减轻思想上的压力，相信两三个月后，当身体自身的平衡回来后，她会逐渐平复乱长的骨，恢复她自身正常的秩序象你生病前一样。祝你早日康复！

花点时间，我帮孩子确诊：这是一种基因疾病

Fibrodysplasia Ossificans Progressiva


Fibrodysplasia ossificans progressiva (FOP) is a rare genetic disorder that causes soft tissues to transform permanently into bone. These bones grow abnormally in the muscles, tendons, ligaments and other connective tissues, forming bridges of extra bone across the joints. As a result, movement in the areas affected by FOP is greatly restricted and sometimes impossible. The condition affects many areas of the body including, but not limited to, the neck, spine, chest, shoulders, elbows, wrists, hips, knees, ankles and jaw.

FOP is an autosomal dominant condition, which means that a person needs only to get the gene for FOP from one parent to inherit the disease. In most cases, however, FOP is a new mutation or an accident of nature. In fact, the parents of FOP patients typically don't have the disease. A person with FOP, however, has a 50 percent chance of passing it on to his or her child.

可怜的孩子！

好像是没得治。记得以前看到一篇文章，哪个国家我记不得了，有个白人女孩也得了同样的病，没得治，太罕见了。

估计是很罕见的疾病，还是去北京，上海看一下吧。但是估计能治愈的可能性很小，一般都是基因变异引起的。