I am currently in the process of applying for SSDI I haven't heard anything official yet but it is looking good. However, I am not holding my breath. On Feb...
Kim, What problems have you had with Dural Ectasia? I would be really interested in your case. I had back surgery, sacral lamenectamy in August. My horrible...
can you please tell me how to find the marfan chat? I have yahoo instant messenger my yahoo mane is hethbean can you add me? I don't know how it works? ...
Welcome everybody including Sherry! I'm sure Sherry's message was not meant as spam since I know her and have never had her give me mortgage info! A few...
Hi All, I went to see the rep for ANS about my stimulator today because it had not been working properly. I seems that it moved or migrated or whatever term...
Hi, Marsha, everyone, sorry didn't know this site was here stumbled onto it through the Marfan-list. Everyone have a blessed week-end! PS Marsha's right didn't...
Hello Sherry. I know, I am not Marsha, but I want to welcome you to the group. Would gladly welcome you to our messenger chats Sun, Wed, Fri evenings at 8 pm...
Hello Scott, I didn't know that there was another person in this group that was from Michigan. I found out that I have marf's back in 94 and had open heart...
Sorry guys I won't be around again tomorrow afternoon - gotta chauffer for doctor appointments! Somebody else can open if there is a volunteer. Post to the...
Anyone interested in hearing Dr. Dietz (or can get their doctors to come) are welcome to join the Heart of Iowa Chapter of NMF in Des Moines March 30 or 31. He...
I have a friend who has been diagnosed with Ehlers-Danlos. What little amount I have read on this disorder tells me that it is very similar to Marfan. I am...
My son John is 9. We were told he has Marfans when he was 3. The doctors debated and debated. When he was 7 a doctor said no - it was Ehlers Danlos. When he...
Tammy: Go to marfans.org. Look under related disorders. The tough thing with conncective tissue disorders is that so many of them overlap each other that it is...
Hello, There was a segment on Ripley's Believe it or not about Ehlers-Danlos yesterday.. Anyway, go to http://www.ednf.org/ and here is another site that has...
hi I live in a small town of around 4000 people. I know of 2 families that have been diagnosed with this disorder.Apart from hypermobility I havent really seen...
Hi there, I have been with this group for awhile now and have absolutely no idea how to join the chat if, indeed, you guys still have chat sessions. I keep...
Hi, My son Daniel was diag with marfans some time ago now. He is now 18 yrs old but presented at birth as an 8 lb 8 oz 58cm long gorgeous boy, with 2 hernias...
Hello Sharon, and any others that want to get into chat. First step is to have Yahoo Messenger on your computer. Second step is when the chats are supposed to...
There is a pretty wide variety of expressions of marfans accross our population. The important thing is try and narrow down the specific type of connective...
hello my name is rosalind and my husband and son have marfans, im feel for you and your son as it sounds like you have been through so much since he was born....
Hello all - Tomorrow I am doing battle with our health insurance company via conference call with a panel, so I guess I'm looking for any advice or at least a...
Many hospitals have a fund for people who can not pay thier bill. Many doctors will reduce thier fee or drop it all together if you contact the doctor...
That can be true.....an example....17 years ago when I gave birth to my son we tried every hospital in the book but they all wanted a huge handful of money...
Thanks, everyone--it is nice to have people who understand the frustration. They just don't seem to get it. Yes, I knew the doctor was not preferred (thus my...
When I have owed Doctors and medical establishments money, (and many times I did have insurance but there was copays or out of network fees, etc.), I would...
Thank you for that Lee. I am in the process of trying to gain financial control and it is so important to do what you are doing. Our medical bills are...
