Hello from London

[Dialized]

Hi, my name is Uzoma. Im 17 and from London. I was diagnosed with FSGS in 2004 and started dialysis 2 weeks ago after being rushed to hospital. I've joined this site to get some answers and vital information. Thanks 

[MooseMom]

Hiya!  I used to live in London..in which part do you live?

I have fsgs, too, but I wasn't diagnosed until I was 34.  I've had it for almost 20 years now.  I'm not on dialysis yet, but I will be soon probably.  I'm glad you have joined us because we have all kinds of members who would be happy to answer your questions as well as they can.  We have plenty of people with fsgs, plenty who live in the UK and plenty who are on the young side.  None love dialysis!

Looking forward to hearing more from you!

[peleroja]

Welcome to the group, Uzoma.  Lots of good information and friends here.  Glad you joined!

[Dialized]

MooseMom I live in East London in a place called Chingford. Where do you live now?. Thats amazing how you have lived with fsgs for 20 years, 6 years is been too much for me!. How do you get by with no dialysis and no transplant???

[looneytunes]

Hello Uzoma and welcome to IHD!   

[MooseMom]

MooseMom I live in East London in a place called Chingford. Where do you live now?. Thats amazing how you have lived with fsgs for 20 years, 6 years is been too much for me!. How do you get by with no dialysis and no transplant???

I lived in Sanderstead with is S. London; when I worked in the City, I had a couple of colleagues from Chingford.  My son still lives there; he is close to your age at 19.  I live west of Chicago now.

I have no idea why I've lived so long with this without dialysis.  It is not uncommon, though.  Unfortunately, your situation isn't uncommon, either.  I don't think anyone knows enough about this disease to be able to predict how quickly or slowly it will progress.

[billmoria]

Hi Uzoma   5 years on D  from Ilford. This site has lots of answers and lots of people to help.
Bill

[galvo]

G'day Uzoma and  .

[Poppylicious]

  to ihd Uzoma!

I'm in England too (East Anglia), but it's my Blokey who's on dialysis.

 

[Dialized]

Hi poppylicious, The first thing i actually did before I even joined this forum was read the WHOLE of your blog about Blokey and his dialysis. Its very interesting!. Oh East Anglia? my brother goes to University of East Anglia!.

[Rerun]

Hi Uzoma and welcome to IHD.  I'm so glad you found us.  My ancestors were from England then one of them came over on the Mayflower and the rest is history.  This is a great site to begin you dialysis journey.

Rerun, Moderator     

[Poppylicious]

Hi poppylicious, The first thing i actually did before I even joined this forum was read the WHOLE of your blog about Blokey and his dialysis. Its very interesting!. Oh East Anglia? my brother goes to University of East Anglia!.

Wow! Really? You are obviously bonkers (I just reread it in its entirety and found myself falling asleep!) My little brother did his MA at the UEA and loved the area so much he stayed there.  I'm a little further east.

Hope the dialysis is going okay (or as okay as it can).

My ancestors were from England then one of them came over on the Mayflower and the rest is history.

I realise this is completely off-topic and somewhat hijacking of Uzoma's introductory thread, but I wonder just how many American folk are descended from Mayflower pilgrims ... is it like, all of them?  *chuckles* ... most of the American lovelies that I know (of European descent) can trace themselves back to the Mayflower. But hey, I'm a big genealogy nut-case so if you want to find long-lost English relatives I'm your gal.

 

[MooseMom]

My ancestors were from France, immigrated to Canada where they were kicked out by the bastard Brits ( ) and ended up in southern Louisiana and are known as Cajuns.  So no, not all of us are from the Mayflower. 

And that, Uzoma, is how threads on IHD wander spectacularly from one topic to another in a very short time!

[Poppylicious]

My ancestors were from France, immigrated to Canada where they were kicked out by the bastard Brits ( ) and ended up in southern Louisiana and are known as Cajuns.  So no, not all of us are from the Mayflower. 

My statement about ALL American folk being descended from the Mayflower was completely tongue in cheek (and slightly facetious,) MM. I believe it's actually about one in four who can trace their lineage back to the Mayflower.

[cariad]

  Uzoma!

I am so glad that you found us but wish you hadn't needed to. Please jump in and ask any questions that come to mind.

I look forward to getting to know you better.

[wj13us]

Welcome Uzoma.  Have you taken a look at Kidney Patient Guide yet?  It's a UK based web site similar to this one.  It may be helpful as you work your way through the system.

Bill

[Dialized]

Welcome Uzoma.  Have you taken a look at Kidney Patient Guide yet?  It's a UK based web site similar to this one.  It may be helpful as you work your way through the system.

Bill

I'll take a look at it now. Thanks

[rsudock]

Hello and welcome! I have PKD my entire life and just started dialysis this past July...sucks but still kicking!! Hang in there!

[DrMoskowitz]

Welcome Uzoma. I'd be willing to work with your nephrologist to try to get you off dialysis. Anybody else with FSGS who's not yet on dialysis, please contact me. The lower your serum creatinine, the better the chance I can keep you off dialysis.

Ditto for PKD. There's a very rewmote possibility that our clinical trial may work for patients with PKD already on dialysis, not just for people with early kidney disease. So contact me at GenoMed (www.genomed.com) if you'd like to give it a try. I use safe, already commercially available drugs. To keep some control over the trial, I can't give the details to everybody here in this forum, but I obviously will give the details in private to people who email me. And if my approach works, even for a single case report, we'll publish it so everybody knows it.

Best regards,
Dave Moskowitz MD FACP

[okarol]

There's a very remote possibility that our clinical trial may work for patients with PKD already on dialysis, not just for people with early kidney disease. So contact me at GenoMed (www.genomed.com) if you'd like to give it a try. I use safe, already commercially available drugs. To keep some control over the trial, I can't give the details to everybody here in this forum, but I obviously will give the details in private to people who email me. And if my approach works, even for a single case report, we'll publish it so everybody knows it.

Best regards,
Dave Moskowitz MD FACP

I hate to focus on the negative, but this type of false promise makes me wonder what is really going on.
Please stick to the topic in the introduction threads started by new members. Self promotion is not a welcome, in my opinion.

okarol/admin

[paris]

Welcome Uzoma.   I am sorry that you have to experience all of this at such a young age.   I am glad you found this site. It is full of information and, as you can tell, people who are willing to help and lend support.  I look forward to reading more of your posts and getting to know you.   I also have FSGS.  No known reason, but I wasn't diagnosed until I was many times older than you.    Welcome to IHD   


 Re: Dr. Moskowitz --  I agree with Okarol. Making false promises is kind of like running a scam. If you aren't willing to share your info here, then we can only assume you are here to make a profit off of sick people.  I hope you can explain so we understand where you are coming from.


paris, Moderator

 

[Ang]