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Date March 30, 2017
Name Tatiana
Email tatiananisioti@gmail.com
Home Page
City / Town Athens
State / County Attica
Country Greece
Comments Hello, everybody, amazing and inspiring people, my warmest greetings from Greece! My name is Tatiana Anastasia, I am soon to be turning 40 --feeling quite blessed for-and-about-that-- and I came across this wonderful website and forum suddenly. I do not have MNS myself, but --due to this awesome science called Genetics wonders-- with an extremely, if not equally, rare syndrome, called Hallerman-Streiff, having, though, some of the main characteristics, such as scoliosis/kyphosis, short stature and severe micrognathia in common. Like most of you, I have managed, despite all struggles as child and adolescent, to lead a normal life, to some perhaps inspirational. I took the opportunity to write here for two reasons: 1. To extend my sympathy to you, guys, especially parents with kids affected, and also to admire all of you adults for your statements I've read here; and 2. To ask that member named Dereck B --think he's from Alberta, Canada-- if he feels like of course, to e-mail me privately with some info about his operated scolio




Date August 22, 2012
Name Marshall Grant
Email mashe@internet-zahav.net
Home Page
City / Town Sde Itzhak
State / County
Country Israel
Comments I am a parent of three children, two girls and a boy. My daughters have MNS. The oldest, 16, has had surgery for jaw distraction and has finally finished 5 years of orthodontic treatment. My youngest, 10, began some treatment with retainers a few months ago. Strength to all.




Date April 28, 2012
Name Stephanie
Email sunshine_stephanie500@hotmail.com
Home Page
City / Town United Kingdom
State / County
Country
Comments I am 24 years old i was dianosed with Melnick Needles symdrome when i was 12 but ive had loads of ops i nose done tonsills out ear done 10 teeth out docter said my case was mild i was lucky




Date April 11, 2012
Name Gill
Email gilldysp@btinternet.com
Home Page
City / Town Bexhill
State / County East Sussex
Country England
Comments




Date January 19, 2012
Name Kim
Email kimmacd73@yahoo.com
Home Page
City / Town
State / County
Country Canada
Comments Hi I am in my late 30's and was diagnosed with MNS when I was 12. I have had a number of surgeries for skeletal issues, spinal fusion, leg lengthening, a facial reconstruction and I have an upcoming hip surgery. However in spite of some limitations I have graduated from university secured a great job and have a wonderful life. So for parents out there make sure your child knows they can do anything they put their mind to and for the kids with MNS most things can be overcome :o)




Date September 30, 2011
Name Derek B
Email
Home Page
City / Town
State / County Alberta
Country Canada
Comments Hello everyone! I am Derek, and I was diagnosed with MNS when I was three. Apparently, I have a mutation of the mutation, which I guess I have to thank for being alive. I have done research myself on MNS, and it feels cool yet weird that almost every symptom I possess. Throughout my life, I have had surgeries in Texas for my scoliosis and kyphosis, and I am happy to say that this summer, I will be fused and it will be all over. Thanks for the wonderful website! God Bless :)




Date October 7, 2009
Name lisa
Email lisa_graham11@yahoo.com
Home Page MNS
City / Town indianaplis
State / County indiana
Country marion
Comments I have twins boys that have MNS. They are 4yrs old..




Date November 3, 2008
Name Marina
Email
Home Page
City / Town
State / County
Country
Comments




Date November 3, 2008
Name Marina
Email
Home Page
City / Town
State / County
Country
Comments I know perfectly that MNS is a very hard condition and it's so difficult to live with it, but please stop self-pity...I really hate this kind of behavior, everybody have the same problems in relationship with other people bI know perfectly that MNS is a very hard condition and it's so difficult to live with it, but please stop self-pity...I really hate this kind of behavior, everybody have the same problems in relationship with other people because we are different, but we have to try to go on and stop crying all the time...Itís so degrading!ecause we are different, but we have to try to go on and stop crying all the time...Itís so degrading!




Date November 3, 2008
Name Marina
Email
Home Page
City / Town
State / County
Country
Comments Message Fixed: I know perfectly that MNS is a very hard condition and it's so difficult to live with it, but please stop self-pity...I really hate this kind of behavior, everybody have the same problems in relationship with other people because we are different, but we have to try to go on and stop crying all the time...Itís so degrading!




Date October 14, 2008
Name Sarrah Marie Scott
Email Sarrahwith2rs@gmail.com
Home Page
City / Town Newport News
State / County VA
Country US
Comments I wanted to make sure you can get in touch if anyone wants so here's an alternate address.




Date October 14, 2008
Name Sarrah Marie Scott
Email Sarrahwith2rs@hotmail.com
Home Page
City / Town Newport News
State / County VA
Country US
Comments I just wanted to say hi to everyone I'm still alive I lost a boy to the syndrome @ 23 weeks. However, just remember I do have a normal male child whom is unaffected in anyway, who is 8. I just want to be normal and not starred at like I'm different. Lately, I've been having issues with my female organs so if anyone knows about that that would be great. Anyone want to talk to me about it that would be awesome. I have an alternate email sarrahwith2rs@gmail.com you can reach me there too! I hate MNS but I'm trying to deal with the health problems and work. I mean I'm 28, 4'9' and maybe 78lbs soaking wet- come on my 8yr. old is bigger than me.




Date October 2, 2008
Name Amy
Email anhaight@hotmail.com
Home Page
City / Town
State / County
Country USA
Comments I am a student writing a paper on MNS and would love to have additional info or links, if you have the time! Thanks




Date June 20, 2008
Name charmaine bugden
Email playgirlmaine80@hotmail.co.uk
Home Page
City / Town chatham
State / County kent
Country uk
Comments i have a cousin with mns i'm glad some1 is trying 2 made all aware of the syndrome. my cousin sadly passed away in 2006 aged 14 with complications regardin the syndrome. it would be nice to know how ur daughter is doing from time 2 time. best wished charmaine bugden




Date May 30, 2008
Name lisa graham
Email lisa_graham11@yahoo.com
Home Page melick needles syndrome
City / Town indianapolis
State / County indiana
Country marion
Comments jason and howie has the syndrome and iam there mother. i would like more information about this. Lisa Graham




Date February 6, 2008
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments If you have signed the guest book and not received a reply from me, I apologise. Please post a message stating 'No message received' and I will contact you as soon as possible. Please accept my apologies for not replying sooner. I will explain some reasons for this in my answer to you. Gill. x




Date November 7, 2007
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments Yes people, the McInnes' are correct. Recent information received just recently by me does indeed identify Filamin A as a breakthrough for the genetic culprit of MNS. I've been pipped at the post in letting you all know. If any professional wants more information, please contact me using the contact details listed on this site. Gill.




Date November 7, 2007
Name Marsha and Martin Macinnis
Email macinnismartin@hotmail.com
Home Page
City / Town Stephenville Crossing
State / County Newfoundland
Country Canada
Comments To Doctor Atif of the Philipeans,and otheres! The genetic testing to give a definitive molecular diagnosis is being done in New Zealand. The gene that was affected in our little Caroline is called "FILIMAN A". Im not sure if this is the only gene that can be affected or if others can be affected for the same syndrome. I just know it was filiman A that was the problem in Caroline which allowed researchers to determine that she had MNS. Hope this helps. If we can help any one else or if you just want to talk, you can reach my husband and I at (709)646-5111. God Bless, Marsha and Martin MacInnis




Date September 14, 2007
Name dr.saba asif
Email sabamanghi1234@yahoo.com
Home Page
City / Town karachi
State / County
Country pakistan
Comments the information provided in this text is really useful.it really helped me alot in managing my patient. can u provide some recent information regardind the chromosomal analysis and any recent advancement regarding its treatment and prognosis.




Date March 31, 2007
Name Gil
Email
Home Page
City / Town
State / County
Country uk
Comments If you would like to speak to someone personally, please use the telephone number listed. If you are like me, I would rather speak to someone 'face to face'. If I am not around, you can leave a message on my answserphone. Again, if like me you hate these machines , please do not hang up, but leave your name and telephone number and that you are wanting to speak to me about MNS. I will call you as soon as is possible. Much love to you Gill. x




Date March 31, 2007
Name Gill
Email
Home Page
City / Town
State / County
Country uk
Comments I have to apologise to those of you who have posted a message and are expecting a message from me. I have had a few problems concerning the website and have also suffered 3 deaths within the family, since I last posted a message from this site. Can I say that it is very nice to see messages from those of you who have visited the site, and that because of the computer problems I have had, if you need personal help or information, please, use the telephone number given on the contact site. Sometimes, it is a lot easier to speak on the telephone than to write to you via email, also you get your information at the exact time that you need it. At the moment, emails do not seem to be getting to me and i am not sure of the reason for this. I apologise. If you are requiring instant information or, like me, would rather speak to the person you are contacting me, please use the telephone number.... I know that sometimes this is more expensive for you, but I guess it depends on how desperate you are for the information you crave and if lik




Date March 31, 2007
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments I must apologise to those of you who have genuinly visited this website for information or help, and have encountered, shall I say, less than appropriate messages for something other than the help you need. We are monitoring these messages as much as possible and remove them as soon as is possible. Unfortunately, there is not at present, a programme to delete these advertisements before they appear. Please ignore them and hope that upon their deletion, they get the message that they are not wanted or invited to advertise their wares. These people are unscrupilous and very much unwanted on this website as I am sure you will agree.




Date December 5, 2006
Name D. Goedbloed
Email daantjuh10012@hotmail.com
Home Page
City / Town
State / County
Country The Netherlands
Comments I'm 19 and diagnosed with MNS when I was 3 years old. Far as I know I'm the only person with MNS in my country and because of that I'd like to be in contact with people who have MNS. I think this website is a very good initiative to get more information about the syndrome. If you have MNS (or if you know somebody with the syndrome) and want to share experiences and stories please sent me an e-mail. I would be very glad to have contact with people who have MNS!




Date November 29, 2006
Name Gill
Email
Home Page
City / Town
State / County
Country UK
Comments Hello everyone. This is not the way I wish to speak with you, but I am having a few problems!!! I am having to speak to you all this way because I am having problems with my computer. It seems, that some other abnormalities have surfaced since the site began - more reportedly, hip/ankle problems - these have usually been associated with FMD (Frontometaphysial Dysplasia- normally shown in boys and as a cousin of MNS. Spinal and Mandibular (spine and Jaw) operations seem to be happening more regularly and hip dysplasia is more common(as far as I am aware, this is also a problem with FMD). As usual, pneumonia, chest and ear infections are most common - in pneumonia, unfortunately, this is more fatal than the disease itself! It is a very strong attachment to the condition, due to the lung function in sufferers and has to be kept in check, especially in the very young. I cannot stress enough, as stated in my report on Aymie, that any cold can kill. Colds can be regulated, but it can so quickly turn to pneumonia. I have had m




Date November 25, 2006
Name Normita Guerrero
Email beng_ayc@yahoo.com
Home Page
City / Town Bulacan
State / County Philippines
Country
Comments I am 44 years old and has a daughte who's turning 2 next month. I gave birth to her when I was already 42 years old and she was born with respiratory problem (asthma) and I was advised to take her to a genetic specialist who said that she has MNS which she got from me. The doctor took notice of my physical features which are very much similar to my baby. Other than her asthma (which is attributed to narrow chest cavity) it took her 1 year and 8 months before she started walking. Other than her mobility, she's a happy child and I hope that she would grow up like me who was able to excel academically and end up with a good career to lead a normal life.