Guest guest Posted January 2, 1996 Report Share Posted January 2, 1996 Hi Jean, My name is Lawton and I am from New-Zealand. Could you give me your private e-mail address please. There is possible MELAS in our family and I would like to speak to someone about this. Thanks, . Re: MELAS Hello DOWN there!Annie ..... Just wanted to make you aware of two other Mito lists, which you might be interested in ....<http://health.groups.yahoo.com/group/aussiemito/> .... this is the list for Australians, which, I assume, has more Australian content and Australian networking. You might find that you are not so alone in Aussieland as you thought!<http:health.groups.yahoo.com/group/adultmito/> .... this is a list for adults and/or their caregivers. Since I am the list owner, please contact me privately for further information.Jean Shepherd ..... adult with Mitochondrial Encephalomyopathy annietauber wrote: Hello out there !!I am down here in Australia and have a nineteen year old daughter who was diagnosed with Melas 4 years ago. I have never met another mito kid or parent as our population is so much smaller than yours. There is no support here as most doctors have not even heard of the condition. I would love to hear from someone out there who has MELAS, please drop me a line, I feel very alone. Regards Annie.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hello out there !! I am down here in Australia and have a nineteen year old daughter who was diagnosed with Melas 4 years ago. I have never met another mito kid or parent as our population is so much smaller than yours. There is no support here as most doctors have not even heard of the condition. I would love to hear from someone out there who has MELAS, please drop me a line, I feel very alone. Regards Annie. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Dear Annie, My daughter passed away in 2002 in the cause of kidney failure and underlying cause "MELAS".You can read her story at the web-site: www.melas-angel.netYou can also visit the web-site of www.umdf.org for more information about the MELAS. Kindest regards, ph Yu-----Original Message-----From: annietauber Sent: Wednesday, January 07, 2004 7:41 PMTo: Mito Subject: MELASHello out there !!I am down here in Australia and have a nineteen year old daughter who was diagnosed with Melas 4 years ago. I have never met another mito kid or parent as our population is so much smaller than yours. There is no support here as most doctors have not even heard of the condition. I would love to hear from someone out there who has MELAS, please drop me a line, I feel very alone. Regards Annie.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Dear Annie, My daughter passed away in 2002 in the cause of kidney failure and underlying cause "MELAS".You can read her story at the web-site: www.melas-angel.netYou can also visit the web-site of www.umdf.org for more information about the MELAS. Kindest regards, ph Yu-----Original Message-----From: annietauber Sent: Wednesday, January 07, 2004 7:41 PMTo: Mito Subject: MELASHello out there !!I am down here in Australia and have a nineteen year old daughter who was diagnosed with Melas 4 years ago. I have never met another mito kid or parent as our population is so much smaller than yours. There is no support here as most doctors have not even heard of the condition. I would love to hear from someone out there who has MELAS, please drop me a line, I feel very alone. Regards Annie.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Dear Annie, My daughter passed away in 2002 in the cause of kidney failure and underlying cause "MELAS".You can read her story at the web-site: www.melas-angel.netYou can also visit the web-site of www.umdf.org for more information about the MELAS. Kindest regards, ph Yu-----Original Message-----From: annietauber Sent: Wednesday, January 07, 2004 7:41 PMTo: Mito Subject: MELASHello out there !!I am down here in Australia and have a nineteen year old daughter who was diagnosed with Melas 4 years ago. I have never met another mito kid or parent as our population is so much smaller than yours. There is no support here as most doctors have not even heard of the condition. I would love to hear from someone out there who has MELAS, please drop me a line, I feel very alone. Regards Annie.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Hi Anne, My name is Marie. I am mom to 8 wonderful kids. I have been a silent member on this list for well over a year. One of my resolutions for the New Year was to not be so silent. Our suspected diagnosis is MELAS. We have varying degrees of presentation in our family. This ranges from soft signs in some to a 17 year old son with atypical Autism and a 24 year old daughter who has paralysis from stroke-like-episodes. We've been waiting for mtDNA on muscle tissue to be completed since approx. May of 2002 to see if this can be confirmed. I would love to correspond with you. Please feel free to email me at md8senuf@... Warmest regards, Marie MELAS Hello out there !!I am down here in Australia and have a nineteen year old daughter who was diagnosed with Melas 4 years ago. I have never met another mito kid or parent as our population is so much smaller than yours. There is no support here as most doctors have not even heard of the condition. I would love to hear from someone out there who has MELAS, please drop me a line, I feel very alone. Regards Annie.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Hello DOWN there! Annie ..... Just wanted to make you aware of two other Mito lists, which you might be interested in .... <http://health.groups.yahoo.com/group/aussiemito/> .... this is the list for Australians, which, I assume, has more Australian content and Australian networking. You might find that you are not so alone in Aussieland as you thought! <http:health.groups.yahoo.com/group/adultmito/> .... this is a list for adults and/or their caregivers. Since I am the list owner, please contact me privately for further information. Jean Shepherd ..... adult with Mitochondrial Encephalomyopathy annietauber wrote: Hello out there !! I am down here in Australia and have a nineteen year old daughter who was diagnosed with Melas 4 years ago. I have never met another mito kid or parent as our population is so much smaller than yours. There is no support here as most doctors have not even heard of the condition. I would love to hear from someone out there who has MELAS, please drop me a line, I feel very alone. Regards Annie. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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