به دنبال سازمان های حمایتی از نوروفیبروماتوز بودم که به این متن در یک یاهو گروه رسیدم. نوشته است:
یک اختلال زنتیکی که از هر چهار هزار نفر یک نفر را در گیر می کند
I am looking for an organization who work for people affected by
Neurofibromatosis (NF), a genetic disorder that affects 1 in 4,000
births.
برای اطلاعات بیشتر به ادرس زیر مراجعه نمایید
For more information please refer to http://ctf.org
احتمالا در بمبی هند سازمان حمایتی وجود ندارد
There is a possibility that such NGO is not existing in Bombay, India
من مایلم چنین سازمانی را شروع کنم
I would be interested to start such a NGO
Neurofibromatosis type 1 (NF1) is the more common neurofibromatosis condition and affects ten times more people than NF2. The diagnosis of NF1 is made when an individual has two or more of the following findings:
At least six cafe-au-lait macules over 5 mm in greatest diameter before puberty or six cafe-au-lait macules over 15 mm in greatest diameter after puberty
Two or more neurofibromas of any type or one plexiform neurofibroma
Multiple freckles in the axillary (armpit) or inguinal (groin) regions
A distinctive bone abnormality involving the eye socket or arm/leg bones
A tumor on the optic nerve located in the brain called an optic glioma
Two or more Lisch nodules on slit-lamp examination
A parent, sibling, or child with NF1
تشخیص بیماری نوع دو
Diagnoing Neurofiromatosis type 2
Neurofibromatosis
type 2 (NF2) is sometimes more difficult to diagnose, since most of the
features of this disorder may require imaging by CT or MRI scan to
detect.
Unlike NF1, people with NF2 have few skin abnormalities
and do not typically have café-au-lait macules, freckling, or Lisch
nodules. Most of the signs of NF2 are tumors that grow on nerves and in
the brain. The diagnosis of NF2 is made when an individual has the
following findings:
Schwannomas on both 8th cranial (vestibular) nerves OR
A parent, sibling, or child with NF2 plus:
» One vestibular schwannoma in a person less than 30 years of age OR
» Any two of the following: meningioma, glioma, schwannoma, juvenile cataracts
The diagnosis of NF2 should be suspected when an individual has the following findings:
One vestibular schwannoma in a person less than 30 years of age in
combination with either a meningioma, schwannoma, glioma, or juvenile
cataracts
More than one meningioma in a person less than 30 years old with a vestibular schwannoma
More than one meningioma in a person with a glioma, schwannoma, or juvenile cataracts
بسم الله الرحمن الرحیم. یا من اسمه دوا و ذکره شفاء.