-रमेश खतिवडा, खारेबाट फर्किएर/चरिकोट-
आफ्नो त यस्तो भयो नै छोराछोरी पनि यस्तै रुप लिएर जन्मन थाले के गर्ने? यिनिहरुको भविष्यदेखि चिन्ता लाग्छ । “सरहरुले केही पहल गरिदिए मेरा छोराछोरीको उपचार हुन सक्थ्यो कि? ”
नेपालकै सस्तो जलविद्युत आयोजना मानिएको माथिल्लो तामाकोशी जलविद्युत आयोजनाले दोलखाका पत्रकारहरुको लागि राखेको आयोजना स्थल भ्रमण गर्न पुगेका संचारकर्मीहरुसँग खारे गाविस-४ कसेरीकी ३५ वर्षीया देवी बुढाथोकीले यसरी नै आफ्नो दुःख सुनाइन्।
सदरमुकाम चरिकोटबाट करिव ५० किलोमिटर उत्तरमा रहेको खारे-४ को यो बुढाथोकी परिवारमा आमादेखि छोराछोरीसम्म अनुहार र शरीरभरी रौं आउने समस्या बढ्दै गएपछि उनीहरु चिन्तित बन्न थालेका छन्।
जिल्लाको लामावगर गाविसमा रहेको बहुचर्चित माथिल्लो तामाकोशी जलविद्युत आयोजनाको अवलोकन गरेर पत्रकारहरु फर्कदैं छन् भन्ने गाउँलेबाट थाहा पाएपछि पति नरबहादुर, अनुहारभरि कपाल उम्रिएकी आफ्ना छ महिनाकी छोरी मन्दिरा सहित अन्य दुई जना छोराछोरी लिएर उनीहरु दोवाटोमा आएर बसेका थिए ।
३५ वर्षीया देवीको अनुहारभरि रौं उम्रिएको छ । उनले भनिन् मेरो जन्मदेखि कै समस्या हो। धेरै ठाउँमा उपचारका लागि हारगुहार गर्यौं। आर्थिक अवस्था कमजोर भएकोले काँहिबाट पनि उपचारको सहयोग पाउन सकिनँ । अहिले छोराछोरीमा समेत यो समस्या देखिएपछि अलमल्लमा परेका छौं ।
देवीका पाँच जना छोराछोरी मध्ये तीन जनालाई अनुहारभरि र जिउमा रौं आउने समस्या छ । तर अचम्म उनीहरुका दुई जना एक छोरा र एक छोरीमा भने यो समस्या देखिएको छैन ।
एघार वर्षीया जेठी छोरी इन्दिरा र आठ वर्षीय माइलो छोरो सान्दाइमा यो रौं उम्रने समस्या नभएको उनीहरुले बताए । तर नौं वर्षीया माइली छोरी मन्जुरा, आठ वर्षीय जेठो छोरो निरज र छ महिनाकी कान्छी छोरी मन्दिरामा यो समस्या देखिएको छ ।
नरबहादुरले भने “तीनै जनाको अनुहारभरि र शरिरमा पनि रौं उम्रिएको छ।” छोराछोरीको यो जन्मेदेखिकै समस्या भएको पनि उनले बताए । अझ छ महिनाकी काखकी छोरी मन्दिराको अनुहारभरि धेरै रौं देखिन्छ ।
रौं उम्रिएका तीनजना छोराछोरी मध्ये दुई जना गाउँमै नजिकको विद्यालयमा पढछन् । विद्यालयमा पढ्दा साथीहरुले अनेक शव्दले जिस्क्याउँदा आफ्ना छोराछोरी रुँदै आफूकहाँ आउने गरेको र कहिलेकाँही विद्यालय समेत जान नमान्ने गरेको देवीले बताइन् ।
देवीका पति नरबहादुरले भने- यिनीहरुलाई राम्रै ठाउँमा लगेर उपचार गराउने इच्छा त छ तर के गर्ने आर्थिक अवस्थाले भ्याउँदैन। उनको परिवार गाउँमा अरुको जग्गा कमाएर खाने गरेको स्थानीय बासिन्दा रामकुमार खड्काले बताए।
परिवारमा नै समस्या देखिएपछि चिन्तित बनेको परिवारको उद्धार कसले गरिदेला ? तपाईँहरु मध्ये कसैलाई यस्तो किन भयो अनि यसको उपचार कसरी हुन्छ भन्ने कुरा थाहा छ कि ?
(गाउँबाट फर्किए लगत्तै यो समाचार हतारमा तयार गरेको हुँ । तपाईलाई यो परिवारको थप कुनै जानकारी चाहिए मलाई rameshkhatiwada@gmail.com वा ९७४१०५९३६८ मा सम्पर्क गर्नुहोला)
No related posts.
We have to come forward to help this family to live normal life specially with the children any one of us who got some Idea how to make These family life better to get in touch with the ORGANIZATION or the CHARITY or the DOCTORS group SPECIALLY who can solve this problem in our country or if not request help the to fund rise with our people around the world,Because
I have seen some of TV programm in london that around the world difficult cases like tummer on face which is really painfull even you see that and when these people get touch with those organization they try to help their life come in normal and happy life at the end I believe if we do some efford on it we will make it please I request the person or organization please comeforward to help hope most of people in our country or out side country they will be happy to do fund rise when you start
मन परे हरियो, नपरे रातो
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ke garne ho tapai haru ko sallaha anusar ma pani bajet ko lagi sahayogee banne6u yesto samasiya kasaile pani na bhognu paros dhannebad
मन परे हरियो, नपरे रातो
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Mukti Jee
Your comment and setire on “Dr.Saila” creates an another issue of discussion. I think you wouldn’t have considered Saila as a doctor at all either Phd or MBBS. I cant guess any Nepali with the name Saila is either Phd or MBBS.
The point I’m trying to make is that you are tyring to undermine the MBBS doctors from Bihar, if it is so I don’t know how many Nepalese doctors are qualified from Bihar and they have treated millions of Nepali for years. If you know dosctors from Bihar and they are not good in their profession in your knowledge, don’t generalize. Because I have seen doctors from other states of India, Bangladesh, Nepal,Pakistan, UK, Russia, USA are not good. It is with all the professions. Not all Phd from USA and UK are good.Unfortunately I can’t name them.
We should all remove the mentality we have against Bihar, Up and India as a whole. Would you please consider why there is Tarai Aandolan in Nepal. By the way neither I’m a MBBS doctor nor a person from Tarai. To be very clear please don’t bring issues of serious nature which we can’t stand for. Thank you.
मन परे हरियो, नपरे रातो
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ak le arkolai dukha pareko belama sahayoga garne bani basalau aawasya ak dina hamro desha sundar shanta hunechha
मन परे हरियो, नपरे रातो
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mero comment khai??
मन परे हरियो, नपरे रातो
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यार कती जना को उपचार गेर्ने हो ? पहिला उन्लाई मेडिकल डॉ को मा जान सल्लाह दिनेकी?पहिला ती आमै को ल्याप्रोस्कपी वा उनको बुढो को नसा क्षेदन गर्न पठाउनु परयो/ अनी रौ को उन्मूलन गरौला/
“हगाई भन्दा पदाई ठुलो जिम्मावाल मुखिया को” भने जस्तो किन गर्या साथी हो/ सहयोग त गरौला तर हिसाब किताब कती लागने हो?निकाल्नुस न है छितै/
राजा फालने कुरा र ती बाबु नानी को रौ फालने कुराको बिरोध गर्ने त कुरै भएन नि?
बेला
बेल्जियम
मन परे हरियो, नपरे रातो
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रमेश भाइ ,
र्सवप्रथम तिमीलाई धन्यवाद, दोलखा जिल्लाको बिकट गाँउले परिवारको पिडालाई मेरो संसार को सञ्जालमार्फ संसारभर जानकारी गर्राई सहयोगको पहल गरेकोमा ।
र
शुभकामना, भविष्य यस्तै सरहानय कार्य गर्न ।
दाइ
सुरेश राउत
अध्यक्ष
सामुदायिक सूचना केन्द्र नेपाल, दोलखा
( रमेश भाइले यो समाचार मा update गरिदेउ है )
मन परे हरियो, नपरे रातो
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मित्रहरु मान्छेले मान्छेलाइ सहयोग गर्ने भनेको यस्तै अवस्थामा हो ! कमेन्टमा निशुल्क अर्ति उपदेश र दिक्कलाग्दा थ्यौरि दिनुभन्दा जसले जे-जति सकिन्छ सकिन्छ सहयोग गरौँ यो परिवारलाइ यो रोगबाट मुक्ति दिलाउन ! उमेशजि मान्छेहरुले अज्ञात इश्वर र देविहरुका नाममा अनि पार्टिहरुका नाममा चन्दा असुलेर हुने देशमा हामिले किन एउटा असल कारणका निम्ति केहि रकम न-उठाउने ? उमेशजि रकम संकलन गर्ने कुनै Idea निकल्नोस र यहाँ प्रश्तुत हुनुहोस ! हामि नेपालि हौँ र नेपालिलाइ सहयोग गरौँ !!
मेरो तर्फबाट $15.00 म सहयोग गर्नेछु ! थोपा थोपा मिलेर नै नदि बन्ने हो क्या रे !!
मन परे हरियो, नपरे रातो
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Dr. Saila I am surprised how you became a doctor. If you are a PHD then you are not an illetrate and if you are a MBBS then you should know that for hair removing we have a nice treatment. So don’t think that there is no solution for this problem. And if you got the PHD or MBBS from Bihar(certificate from Neighbor country) then let us know we can write a nice blog on it.
But the above mentioned problem can be solved if we have enough fund for them. If we dont have enought fund for them then let us spread the word until we find a sponosr. Untill then keep your self busy to forward this words.
मन परे हरियो, नपरे रातो
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Can Nara Bahadur & Devi first stop giving birth of any further child?
The oldest daughter & son do not seem to have such probelm.
MANGLE AFNAI DHANGLE!!
मन परे हरियो, नपरे रातो
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uni haru ko purkha monekey ho ki sodhnu bhaeana ?
मन परे हरियो, नपरे रातो
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YETI ka santan hun ki!!!!!!!!!!!
मन परे हरियो, नपरे रातो
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Ramesh khatiwada
nothing is impossible in the world so that it can be treatment.i think , may be some doctors who are related with skin, opening this popular site they . can treatment and help them.
geeat thanks to R khatiwada
मन परे हरियो, नपरे रातो
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It is sad that those family is affected by such disease. It is so nice to see, there are so many viewers ready to help finanacially and other ways as well. But comparing the cases and problems in Nepal, I think this is not much serious and life threatening. I suggest all respected viewers of Mysanser, it is better to donate any assisatace to those facing life threatening cases and problems. I respect your kind heart and helpful nature…
मन परे हरियो, नपरे रातो
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it looks like hirsutism to me, but wonder it is being heredity. anyway hope this webpage helps to know about it & treatment better. http://hirsutism.homestead.com/
मन परे हरियो, नपरे रातो
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Hi Everybody,
I didnot see any solution for her problem.It is better for her not to produce many other children.It may be because of her hermone and ancestor’s gene problem.It will be better not to be worry and try to live happy life.
South Korea
मन परे हरियो, नपरे रातो
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Dear All,
Please refer the following websites for the information of facial hair problem and its treatment.
http://www.advancedlaserskin.com/LaserHair.html
मन परे हरियो, नपरे रातो
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their is the evolution right there now do you belive in it , you better because thats the best evidence to support it
मन परे हरियो, नपरे रातो
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I will try my best to forward this message to the people around the world ……. and if we find any one who can help these people it will be very great………….
Falls Church
VA,22041, USA
मन परे हरियो, नपरे रातो
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This is nothing compared to a girl of Tanahu. This girl’s face and body is totally covered with hair. Not like the ones in this blog. You can see this girl in a place called turture. Its on the prithivi highway.
मन परे हरियो, नपरे रातो
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great work umesh bro.yo family lai hami haru le help garnai parcha .aauta nepali lai aarko nepali le help garnai parcha.
मन परे हरियो, नपरे रातो
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this seems to be a genetic disease, as many have already stated, “Werewolf Syndrome”. It is rare 1 in about 340 million people. It may be acquired due to hormonal, metabolic imbalance or mutation and congenital, and seems congenital in this case, because it is running on family.and it goes from generation, and probably is on recessive trait.
I am not against collecting money and helping them, but before starting these things, lets be sure, Is this curable? the only option is cosmetic, either temporary and permanet like electrolysis and laser, how effective they are, what is the cost and where the service is available. and is there any reason to do that all?
मन परे हरियो, नपरे रातो
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One, who wants to know more about this type of problem, please see this news:
http://slhastings.blogspot.com/2007/09/coming-soon.html
मन परे हरियो, नपरे रातो
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Very very sad story for that poor family…Is there any good Doctor in the house can suggest a good medical treatment for this kind of deasease..This is gotto be a desease..
Also, Umesh and Co. seems like there are interested helpful people here including me want to fund raise for this family..Can you establish a fund to make sure 100% of the fund goes to that poor family ?? I hope to hear continues article to help this family.
मन परे हरियो, नपरे रातो
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More gold has been mined from the thoughts of man than has ever been taken from the eartha so that try to help them there is nothing impossible…
मन परे हरियो, नपरे रातो
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lets talk less and do some fund raising so that they can go through some treatements…
I am a student with limited financial resource but for such things I am ready to contribute…
मन परे हरियो, नपरे रातो
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The condition shown here is most likely to be Hypertrichosis which involves growth of hair on body parts where normally are not expected. It is different to that of hirsutism in which it is seen only in females due to increased level of androgen hormone (male hormone). Hypertrichosis seems to be a disorder of genes not the hormone. This condition is sometimes referred as ‘Wookieeism’ influenced by the Wookiees of “Star Wars” fame.
As it is genetic disorder, gene therapy is the only solution for permanent treatment. Gene therapy is something to correct (addition or removal) the order of gene sequence which is not possible after birth of child and is extremely expensive.
Hence only the option of treatment for these affected people shown in this blog is to undergo some sort of “Beauty Therapy” for the removal of hairs. Plastic surgeons are the best to consult with. Qualified beauticians might be of some some help (Cheaper options, though not permanent) who can prescribe some proven hair removers.
Its not much of problem for boys, provided the hairs do not cover the face. It is girl who needs to be taken care of.
मन परे हरियो, नपरे रातो
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I think it could be genetic problem….Autosomal Resesive
मन परे हरियो, नपरे रातो
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Please send me more details about her, I will forward her case to a Consultant Doctor in London. If you are able to get treatment in Nepal or in India then please set up paypal so we can provide some financial assistance.
Rosan Sapkota
rosansapkota@hotmail.com
मन परे हरियो, नपरे रातो
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I am a doctor but not of skin.
This is not disease . It just makes look bad.
But it is possible to make it look norman.
But trying to make hair fall permantly is not that good for the health. There is only good way to help them is- loving that kids of looking people instead of hateing. Our culture hates saying BAUSI or …. when they sees that kinds of looking people.
We need to start loving those kinds of looking people.
Lulo, Bango, Lato, Andholai Udaune Bani Hatauna Parchha Sabaile.
मन परे हरियो, नपरे रातो
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….and what about Upper Tamakoshi Hydropower Project? Please post the update about that too.
मन परे हरियो, नपरे रातो
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I have heard of this case before with a Maxican family. It runs in a family and there is a scientific term for this too. I think it will be wise to talk with doctors about the cure of this problem.
मन परे हरियो, नपरे रातो
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Umesh ji,
If you will create a separate account for this family, I will pitch in some amount too. Lets do it from Mysansar. We can make it happen!
मन परे हरियो, नपरे रातो
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I am ready if we are starting a fund raise scheme for this family. If all ‘mysansar’ readers pitch in $5, $10, or $20 each then the family will have enough money to treat the current disease. Let me know who is raising the fund for this family.
**I will use PayPal.
मन परे हरियो, नपरे रातो
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It is called “Congenital Hypertrichosis” a very rare genetic disorder. It occurs because of a flaw during pregnancy. A fetus is covered with lanugo which is a very fine layer of hair that falls off during the eighth month. In these cases, it does not fall off but continues to grow. In a serve case known as Congenital Hypertrichosis Terminalis, the hair becomes colored as well and remains there after birth.
in otherhand it is of androgenic resoponse. The hair follicles on much of the body respond to androgens (primarily testosterone and its derivatives). Generally, the rate of hair growth increases and the heaviness of the hairs increases in direct proportion to the androgen levels. However, different areas respond with different sensitivities. Perhaps this lady may have characteristic male voice. Anyway it is genetic disorder and in my opinion it is impossible to treat on the basis of present technology. you can see other such kind of syndrome in the following site in youtube.
http://www.youtube.com/watch?v=UtPG1OokzGo
Himal Luitel
Master of Science in Molecular Biology
Katholieke University Leuven, Belgium
मन परे हरियो, नपरे रातो
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In the vast majority of cases, hypertrichosis is a cosmetic problem. The treatments range from camouflage [e,g,bleaching with hydrogen peroxide] to temporary removal by Waxing , or permanent removal by electrolysis or laser destruction of hair follicles.
Pusp Prasad Luintel
President
Green Nepal Party [ Hariyali ]
Boston, U. S. A.
मन परे हरियो, नपरे रातो
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Ja hos mathi vayako maheilaa ko dhuka ko barema kahee rahaat khoge dinu kosis garnu vayaako ma Ramesh je lai Dhanybad.
मन परे हरियो, नपरे रातो
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My common science says this is a problem of hormones and may be due to intaking specific food and drink/water.
मन परे हरियो, नपरे रातो
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Hoina mancha haroo lai pane kasto kasto rog lagna raha chaa. Mero bichar ma yo rog ko opachar teti samvab cha jasto lagdai na. yo mathi vayako woman ko gin ma nai yo rog lukako cha tai vayera oosko nani haroo ko gin ma pane sarako huna sakcha.
मन परे हरियो, नपरे रातो
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http://en.wikipedia.org/wiki/Hypertrichosis
I found this information in wikipedia about similar condition. I hope it will be helpful to you. Thank you.
Hypertrichosis, congenital generalized Hypertrichosis or Werewolf syndrome is a medical term refferring to a condition of excessive body hair.
Pusp Prasad Luintel
President
Green Nepal Party
[ 'Hariyali ]
Boston, U. S. A.
मन परे हरियो, नपरे रातो
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They should be helped finacially for treatement. This may be simple problem related with harmones.
Is any doctor there watching this blog ??
मन परे हरियो, नपरे रातो
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mero yeuta binamra anurodhchha tapaai laai ki ma laai yo tama koshi ko khu jigyasa bhayeko le yesko sab bibaran photo sahi aajai sake ahilai khabaar post garnu hola
video chainaraakhnu holaa tapaaile raakheko video ya ati fast comp ra net ma ni kahilai khule ko thah chhina
मन परे हरियो, नपरे रातो
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This looks like a hormonal problem. All members of this family should be consulted to “Endocrinologist”. I hope there are some in Kathmandu.
मन परे हरियो, नपरे रातो
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