Neurofibromatosis hom 1
(Hmong)
Neurofibromatosis hom 1 yog dab
tsi?
Neurofibromatosis (nur-oh-fie-broe-mah-toe-
sis) hom 1 (uas kuj muab hu ua NF1) yog ib
qho uas ua tau rau tawv nqaij pauv thiab ua
tau nqaij hlav raws cov leeg xa xov hauv lub
cev. Cov nqaij hlav no feem ntau tsis yog
kab mob khees-xaws.
NF1 raug rau ib leej ntawm 3,000 mus rau
4,000 leej menyuam mos. Kwv yees li
100,000 leej tib neeg hauv teb chaws Meskas
muaj hom no. NF1 raug rau txhua haiv neeg
thiab poj niam thiab txiv neej sib npaug zos.
Dab tsi tsim muaj NF1?
NF1 yog ib qho uas muaj raws caj ces. Qhov
no txhais tau hais tias nws yog tsim los
ntawm ib qho kev sib faib (pauv) hauv lub
NF1 gene (hu ua ntsees). Thaum yug los ces
yeej muaj lawm, thiab tsis muaj dab tsi yuav
los thaiv tau kom txhob muaj. Saib daim
ntawv cob qhia, sau ua “Tej yam muaj raws
caj ces.”
Kwv yees li ib nrab ntawm cov tib neeg uas
muaj NF1 yog tau tus gene uas tsim hom no
los ntawm leej niam los sis leej txiv. Hos ib
nrab muaj vim yog tias muaj kev pauv tshiab
nyob hauv tus gene. Muaj ib qho kev kuaj
ntshav uas kuaj tau cov kev pauv raws caj ces
uas yuav tsim tau NF1. Saib daim ntawv cob
qhia, sau ua “Tej yam muaj raws caj ces.”
Thaum ib tus neeg uas muaj NF1 yug ib tug
menyuam, nws muaj kwv yees li 50% uas tus
menyuam ntawd yuav tau tus NF1 gene thiab.
Neurofibromatosis
type 1 (English)
What is neurofibromatosis type 1?
Neurofibromatosis (nur-oh-fie-broe-mah-
toe-sis) type 1 (also called NF1) is a
condition that causes skin changes as well
as tumors along the nerves in the body. The
tumors are usually not cancer.
NF1 affects one in every 3,000 to 4,000
babies. About 100,000 people in the United
States have it. NF1 affects all races and
both sexes equally.
What causes NF1?
NF1 is a genetic condition. This means it is
caused by a mutation (change) in the NF1
gene. It is present at birth, and nothing can
prevent it. See the education sheet,
“Genetic conditions.”
About half of all people with NF1 have
inherited the gene that causes it from a
parent. The other half have it because of a
new change in the gene. There is a blood
test to identify genetic changes that can
cause NF1. See the education sheet,
“Genetic conditions.”
When a person with NF1 has a child, there
is a 50% chance that the baby will receive
the NF1 gene.
Neurofibromatosis type 1 (Hmong/English)
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Nws yog ua li cas kuaj pom?
Kom kuaj pom NF1, tus kws kho mob yuav
kuaj lub cev. Yuav tsum yog nrhiav tau ob
yam ntawm cov nram qab no mas thiaj li
txiav txim tau tias ib tus neeg muaj NF1:
• yam tsawg los 6 qhov ntaus cim xim kas-
fes (ntaus cim xim av). Cov no feem ntau
yog muaj rau ntawm daim tawv nqaij
ntawm menyuam yaus, thiab tej zaum
yuav loj zuj zus thaum lawv loj hlob.
• ob los sis ntau dua qhov neurofibromas
yau yau – ua qog rau ntawm daim tawv
los sis sab hauv daim tawv nqaij. Lawv
tshwm rau thaum tab tom yuav nto hluas.
• yam tsawg los ib qho plexiform
neurofibroma – nqaij hlav loj zog, tob zog
rau tej leeg xa xov. Tej thaum mas tsis
pom thiab mloog tsis tau li. Feem ntau
lawv tsis ua teeb meem, tab sis qee qhov
tej zaum txawj hlav mus ua khees-xaws.
• tsuas tawv nqaij hauv lub qhov tsos los sis
puab tais.
• sphenoid dysplasia – tus pob txha ncig lub
qhov muag hlav tau tsis zoo.
• tibial dysplasia – nkhaus hlaub
• nqaij hlav rau leeg qhov muag los sis
optic glioma – nqaij hlav los sis tawv tuab
ntawm txoj leeg xa xov rau qhov muag
muaj rau ze 10 mus rau 15% ntawm cov
menyuam yaus uas raug.
• ob los sis ntau dua cov xim tsuas kheej
lam hauv lub ntsiab muag qhov muaj xim.
• tus txheeb ze tshaj (niam, txiv, kwv-tij,
muam, tub, los sis ntxhais) uas muaj NF1.
Qee hom tsos mob ntawm NF1 mas tsis pom
muaj txog txij laus. Qhov no txhais tau tias
tej zaum yuav kuaj tsis pom NF1 txog txij yav
laus, thiab haj yam nyuaj kuaj tau yog tias tsis
muaj lwm tus neeg hauv tsev neeg muaj li.
How is it diagnosed?
To diagnose NF1, the doctor will do a
physical exam. Two of the following must
be found in order to decide that someone
has NF1:
• at least 6 café-au-lait spots (brown
birthmarks). These are often seen on the
skin in young children, and may get
larger with age.
• two or more small neurofibromas -
lumps on or under the skin. They may
appear just before puberty.
• at least one plexiform neurofibroma -
larger, deeper tumors around the nerves.
Sometimes they cannot be seen or felt.
They usually don’t cause a problem, but
a few may develop into cancer.
• freckles in the armpit or groin.
• sphenoid dysplasia - abnormally shaped
bone around the eye.
• tibial dysplasia - curved lower leg bone.
• optic pathway tumor or optic glioma -
tumor or thickening of the optic nerve in
about 10 to 15% of affected children.
• two or more iris Lisch nodules spots on
the colored part of the eye.
• first degree relative (mother, father,
bother, sister, son, or daughter) who has
NF1.
Some of the signs of NF1 may not show up
until later in life. This means that NF1 may
not be diagnosed until later in life,
especially if no one else in the family has it.
Neurofibromatosis type 1 (Hmong/English)
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Puas muaj taus lwm yam teeb Can other problems happen?
meem?
Cov teeb meem nram qab no yog cov nquag The following problems are more common
muaj dua hauv NF1 thiab yuav tsum ua zoo in NF1 and need to be watched for and
saib thiab mus rau kws kho mob los sis kws treated if necessary by the doctor or nurse
pab tu mob kho yog hais tias tsim nyog: practitioner:
• kawm tsis tau ntawv – qhov raug tau • learning disability - about a 50 %
muaj li 50 % chance
• mob tswm xeeb tsis tau zoo • attention deficit disorder (ADD/ADHD)
(ADD/ADHD)
• taub hau loj zog li qhov sawv daws loj • larger head size than average
• qig taub dua li qhov sawv daws qis • shorter than average
• tiav hluas ntxov • early puberty
• muaj ntshav siab • high blood pressure
• scoliosis (khoov pob) • scoliosis (curved spine)
• mob taub hau • headaches
Qhov kev kho yog dab tsi? What is the treatment?
Tsis muaj ib txoj kev los qhia tau tom hau
There is no way to predict what problems a
ntej tias ib tus tib neeg uas muaj NF1 yuav
person with NF1 will have, or how serious
muaj cov teeb meem zoo li cas, thiab seb cov
those problems will be. The features of
teeb meem yuav txaus txhawj li cas. Tab
NF1 can be very different among people in
txawm yog tib tse neeg los tej tsos mob
the same family. Most people with NF1 do
ntawm NF1 yeej tseem sib txawv deb. Feem
not have many of the health problems listed
coob cov tib neeg uas muaj NF1 kuj tsis muaj
in this sheet, and live long, healthy lives.
cov mob uas sau rau hauv daim ntawv no,
thiab lawv nyob ntev, muaj kev noj qab nyob
zoo.
There is no cure. Treatment depends on the
Tsis muaj ib yam tshuaj kho kiag tau. Kev
problems the person has.
kho yuav tsum tau xyuas seb tus tib neeg
muaj cov teeb meem li cas.
Café-au-lait spots and freckles are not a
Cov ntaus cim kas-fes thiab tsuas nqaij kuj
problem and need no treatment.
tsis yog teeb meem thiab tsis tas yuav tsum
kho.

Neurofibromatosis type 1 (Hmong/English)

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Menyuam yaus thiab neeg laus yuav tsum
mus kuaj ntshav siab/qis kom raws caij. Tej
zaum mas ntshav siab yog muaj vim cov
nram no uas tsis nquag muaj thiab muaj kev
kho tau:
• txoj leeg loj xa ntshav mus rau cov raum
pib txhaws zuj zus (renal artery stenosis)
• daim npog cov raum hlav nqaij
(pheochromocytoma)
Children and adults should have their blood
pressure checked regularly. High blood
pressure may be caused by these rare, but
treatable conditions:
• narrowing of the artery to the kidney
(renal artery stenosis)
• tumor of the adrenal gland
(pheochromocytoma)

Lwm txoj kev kho kuj muaj raws li: Other treatments may include:

Teeb meem Kev kho Problem Treatment

ADHD Tshuaj thiab kev cob qhia ADHD medicine and non-medicine
uas tsis siv tshuaj therapies
kawm tsis tau qhia ntawv tshwj xeeb learning special education
ntawv disability
scoliosis (khoov cia rau tus kws kho pob txha scoliosis early care by an orthopaedist
pob) pab thaum ntxov (ib tus kws (curved spine) (a doctor who specializes in
kho mob uas txawj kho pob bones)
nkhaus hlaub curved lower
txha)
leg
neurofibromas yog tias mob los sis khaus, neurofibromas if painful or irritating, they can
mus kho hlais los tau be removed
plexiform ua zoo saib; yog tias loj plexiform watch carefully; if too large,
neurofibroma dhau, los sis hlav ua mob neurofibroma or becomes cancer, surgery or
khees-xaws, tej zaum yuav chemotherapy may be needed
tau mus phais los sis siv fais
fab tua mob
nqaij hlav rau leeg kuaj qhov muag raws caij; optic pathway regular eye exams; rarely need
qhov muag tsawg tsawg zaus thiaj li tumor chemotherapy
yuav tau siv fais fab tua
mob

Kuv yuav tsum tu kuv tus menyuam
li cas?
Txhua tus neeg uas muaj NF1 yuav tsum mus
ntsib kws kho mob los sis kws tu mob uas
paub txog yam no ib zaug ib xyoos, thiab mus
ntsib tus kws ophthalmologist (kws kho qhov
muag). Tej zaum yuav muaj xa kom mus
ntsib lwm tus kws kho mob.
How should I care for my child?
All people with NF1 should be seen yearly
by a doctor or nurse practitioner familiar
with the condition, as well as an
ophthalmologist (eye doctor). Referrals to
other specialists may be needed.

Neurofibromatosis type 1 (Hmong/English)

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Kuv yuav tsum hu rau chaw kho
mob thaum twg?
• yog muaj mob tshiab thiab tsis txawj zoo
• txhawj txog tias tsis pom kev los sis mob
taub hau
• txhawj txog kev kawm los sis coj cwj
pwm
Muaj lus nug?
Daim ntawv no tsis yog sau cob coos rau koj
tus menyuam, tab tsis tsuas muab lus qhia dav
dav xwb. Yog tias koj muaj lus nug dab tsi,
thov hu rau koj lub tsev kho mob.
Yog xav paub ntxiv txog neurofibromatosis,
mus saib:
• The Children’s Tumor Foundation
www.CTF.org
• Neurofibromatosis Inc. www.nfinc.org
Yog xav tau ntaub ntawv nyeem txog yam no
los sis lwm yam kho mob, thov hu los sis mus
xyuas lub tsev qiv ntawv Family Resource
Center, los sis mus xyuas peb daim Web site:
www.childrensmn.org.
When should I call the clinic?
• any new and persistent pain
• concerns about vision or headaches
• learning or behavior concerns
Questions?
This sheet is not specific to your child, but
provides general information. If you have
any questions, please call your clinic.
For more information about
neurofibromatosis, visit:
• The Children’s Tumor Foundation
www.CTF.org
• Neurofibromatosis Inc. www.nfinc.org
For more reading material about this and
other health topics, please call or visit the
Family Resource Center library, or visit our
Web site: www.childrensmn.org.
Children’s Hospitals and Clinics of Minnesota
Patient/Family Education
2525 Chicago Avenue South
Minneapolis, MN 55404
12/07 ©Copyright, translated 12/07
Neurofibromatosis type 1 (Hmong/English)
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