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Marfan Syndrome
Branched from topic: Living on Disability

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6
William A. Ford
03-17-2006
03:04 PM ET (US)
Hey JohnyB,

Sorry to hear you had such a bad time with this. Luckily for me my cardiologist is very concerned about my aneurysm and will not allow it to go as far as the medical field says it can. He wants surgery done before it gets to an acceptable size for surgery to be required.

If there's anything I can do to help you with filing for disability, please feel free to holler and I'll see what I can do.

I filed in '98 and was turned down twice before I finally went before a Federal Judge...without a lawyer. I won my case.

Maybe there's a link or two on my web site (non-commercial) that might assist you in some way...

http://www.WilliamAFord.us

Thanks for the reply!

Y'all take care!

WAFord a.k.a. Bill
5
JohnyB
03-17-2006
05:51 AM ET (US)
I have Marfan's and am in the process of filing for disability. My aorta dissected in 02 and as a result I've had to have repeated surgeries and now have heart failure. I waited until my cardiologist told my I needed my first surgery I scheduled the surgery and about 1 week before the surgery was scheduled is when I dissected. (the surgeon was going on vacation that week and said it would be fine if I waited an extra week until he got back).

Don't put it off to long.
4
William A. Ford
02-06-2004
05:14 PM ET (US)
Hmmm...been even longer this time...I'm getting bad about keeping up with this.

Fighting with depression really sucks. It comes and goes and trying to live with it isn't easy. Meds sort of help, but I guess I haven't found the right combo for me yet. Of course it doesn't help that I don't get out very much any more either. Sitting at home all the time leaves too much time to dwell on things and that isn't good. Breaking that routine isn't easy though when a person is disabled and is limited by what she/he can do. *sigh*

The latest (very late) good news is that we got to see our new granddaughter at Christmas. She's such a sweetie! With our daughter living in NH that doesn't allow us a chance to see them very often. We probably won't see them again until this Summer.

Well, what else can I say to myself? ;-)

Until next time, Enjoy!

WAFord
3
William A. Ford
06-16-2003
12:03 PM ET (US)
Wow! Six months since I last wrote anything.

I had been told by my cardiologist in December that surgery was probably in the very near future, most likely within the next six months of the last echo, but I got a reprieve. He had a CT-Scan done this time to get a more accurate reading of the aneurysm. It had been measured at 4.9cm, and 5.0 to 5.5 is considered the maximum size before surgery is necessary. The CT-Scan showed it at 4.3cm, the same size it was when it was first discovered in 1994, what a relief!

Anyway, I've been dealing with a bout of depression and haven't done a whole lot online. I took a break from the message boards at TMF and just recently started getting back online.

During the last month I've been working on several web sites of mine. I finally moved my personal information to a site of it's own, and here it is; www.WilliamAFord.us

I have information about Marfan syndrome, links to medical web sites, information about depression, and more.

I'll post more soon as I get going again.

WAFord
2
William A. FordPerson was signed in when posted
12-02-2002
03:29 PM ET (US)
Well, I know I get behind on the Disability board (even though I'm still only talking to me ;-)), but this is sad. I hope to get another poster here soon and maybe we can jump-start this board and maybe even the Disability board as well. I can only hope.

Anyway, if you've read the Disability board then you know I've been busy creating some web sites. I've learned a lot and still have a lot more to learn. But I am enjoying it.

I'm moving most of my business stuff off of my personal web site so that I can start giving out that address. If you're curious enough, it's easy to find with a little common sense and thinking.

Once I finish moving the business stuff off I will post the address as it is a great tool for me and could be for others as well. Not only do I have Marfan and Disability related information on there, but I have computer related information on there too.

Maybe I'll post more soon. We'll see, but until then, why don't you post something?

Good day!

WAFord
1
William A. FordPerson was signed in when posted
05-27-2002
03:10 AM ET (US)
Good Day All,

My name is Bill and I was diagnosed with Marfan Syndrome in 1994. Marfan Syndrome is a connective tissue disease. For a detailed medical explanation of Marfan Syndrome click here; http://tinyurl.com/7uo

There is a web site devoted to Marfan Syndrome created by the National Marfan Foundation at; http://www.marfan.org

And there is a great list available at Jeanette Navia's site at; http://www.marfanlife.org/index.html

I have connected the Living on Disability Topic and this one together for those who wish to discuss one, the other or both.

Enjoy!

WAFord
Edited 05-27-2002 03:10 AM
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