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Post by Ross on Jan 24, 2014 21:49:15 GMT 10
Hello and welcome to the ANZ Marfan Syndrome support forum.
My name is Ross, and I am the founder of this forum. I created the forum for people across ANZ suspicious of symptoms, already diagnosed, or concerned for others, as there really isn't much in the way of Marfan-related forums for the region.
I am 25 and was diagnosed with Marfan's when I was 5 in London, UK by Dr Anne Child (http://www.sgul.ac.uk/research/researchers/a-c/anne-child). I have a relatively mild case of Marfan's, having undergone no surgery as yet, for which I'm grateful. I have had two operations to correct pectus carinatum, however.
Interested to see how interest in these forums develops, and I hope something of a community will develop over time.
Look forward to speaking to you all.
Ross
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Post by Alison on Jan 25, 2014 9:26:25 GMT 10
Hi Ross
I am mother to Alix, 15 years old, who is a spontaneous case of Marfan's. - she was diagnosed about 3 years ago by an orthopaedic surgeon who was treating her scoliosis. Alix has a mild case - was on attenol and now on losartan for her heart. Alix is not particularly interested in her Marfan's at this point in time - however, I try to keep in the loop as much as possible in terms of Marfan's and its various treatments and issues - member of National Marfan's Foundation in the states and the Marfan's NSW. We live in Perth.
Alison
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trudy@marfan.net.au
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Post by trudy@marfan.net.au on Jan 25, 2014 9:45:23 GMT 10
Well done, Ross. I hope you'll have lots of people joining up ! I don't mind at all, to have Marfan NSW retiring. Good luck !
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Post by megzee252 on Jan 25, 2014 16:12:47 GMT 10
Hello all!
I am Megan, and my partner has Marfan's. I didn't know what Marfan's was until I met him, and now I'm on a steep learning curve!
I am so glad that this forum has been created, as I'm sure I will have many questions in the future.
Thankyou so much Ross!
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Post by elepots on Jan 25, 2014 17:56:54 GMT 10
Hi my son Nate is 9 yrs and has loeys dietz syndrome which is in the same family as marfans and EDS we live in the hunter valley nsw seeing as there is so little of lds ppl I thought marfans support would be good
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Post by Ross on Jan 26, 2014 0:43:32 GMT 10
Hi Ross I am mother to Alix, 15 years old, who is a spontaneous case of Marfan's. - she was diagnosed about 3 years ago by an orthopaedic surgeon who was treating her scoliosis. Alix has a mild case - was on attenol and now on losartan for her heart. Alix is not particularly interested in her Marfan's at this point in time - however, I try to keep in the loop as much as possible in terms of Marfan's and its various treatments and issues - member of National Marfan's Foundation in the states and the Marfan's NSW. We live in Perth. Alison Hey Alison, Interesting to hear about Alix. Does she show many symptoms? Great that she has been diagnosed. Has she experienced much dilation in her aorta? I started taking Losartan (and eventually introduced Atenolol alongside it again) around 2 years ago now. Results seem to have stayed stable for me. Trust you're the same! |
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Post by Ross on Jan 26, 2014 0:44:54 GMT 10
Hello all! I am Megan, and my partner has Marfan's. I didn't know what Marfan's was until I met him, and now I'm on a steep learning curve! I am so glad that this forum has been created, as I'm sure I will have many questions in the future. Thankyou so much Ross! Glad to have you on the forum Megan! All of the partners I have had were the same as you, having not heard about the condition until meeting me  Great that you're so accepting and willing to learn. How long has your partner been diagnosed? Be sure to post up any questions you do have! |
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Post by Ross on Jan 26, 2014 0:48:11 GMT 10
Hi my son Nate is 9 yrs and has loeys dietz syndrome which is in the same family as marfans and EDS we live in the hunter valley nsw seeing as there is so little of lds ppl I thought marfans support would be good Interesting to hear about Nate! When was he diagnosed? There's plenty of resource around on Loeys Dietz, and many of the folk knowledgeable about Marfan's and EDS will be able to assist with questions you might have I'm sure |
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Post by louise on Jan 26, 2014 8:18:21 GMT 10
Hi, I'm a mum to two kids, my daughter (16yrs) has a genetically diagnosed case (around 8yrs ago) of Marfans while my son (15yrs) has many Marfan mild traits including heart, pectins, weak joints tall thin, etc but they didn't find the mutation of the gene in him... He still gets regular check ups as if he were diagnosed with Marfans. My daughter had her spine fused two years ago, her scoliosis developed from fairly much nothing to three curves, two of which were over 90 degrees .... and this all occurred with in 12 mths! Before her operation her aorta was increasing a few mm each year, after the op her aorta seemed to plateau for a bit but unfortunately its on the move again currently at 4cm. I too had the genetic testing done which same as my son came back showing the FBN1 gene was normal, however I have recently developed an enlargment of my aorta together with issues with the valves..... A curious thing!
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Post by elepots on Jan 26, 2014 17:03:58 GMT 10
Nate was dx in 07
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Post by elepots on Jan 26, 2014 17:05:45 GMT 10
Louise ask to be tested for loeys diets syndrome my son has lds but looks like a marf
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Great that you're so accepting and willing to learn. How long has your partner been diagnosed?