Topic Options
#22604 - 09/08/08 11:04 PM Men with LI?
MISFIT2012 Offline
Member

Registered: 08/09/08
Posts: 20
Loc: Utah
I'm so happy to talk with others that have LI as well, but everyone I have talked to so far has been (as far I know) a woman. Are there any men with LI here?
_________________________
It's good to be alive

Top
#22608 - 09/10/08 01:07 AM Re: Men with LI? [Re: MISFIT2012]
TMPOL Offline
Member

Registered: 07/30/08
Posts: 44
Loc: Collingwood, Ontario, Canada
Hey Misfit2012 - Kotik is a guy - he commented on the post about CIE in here. So send him an e-mail. We met him at the FIRST Conference in Chicago and he is a great guy. If you decided to get in touch with him, be patient as he is a worldly traveller and a adventure outdoorsman, so is not able to check his e-mails often.

My son has LI as well, but is only 15months and can't talk yet.
Sorry - good luck getting in touch with Kotik.

Cheers
Tara
_________________________
Tara, Rene and Myles
Myles born May 22nd 2007
Lamellar Ichthyosis

Top
#22615 - 09/10/08 11:17 PM Re: Men with LI? [Re: TMPOL]
MISFIT2012 Offline
Member

Registered: 08/09/08
Posts: 20
Loc: Utah
Thanks! It seems to be more females have it than males. I recall my mom telling me that a lot of males with LI don't live long, does anyone know if that's true?
_________________________
It's good to be alive

Top
#23404 - 12/04/08 10:07 PM Re: Men with LI? [Re: MISFIT2012]
kevin246 Offline
Member

Registered: 05/31/01
Posts: 20
Loc: Tennessee (USA)
I am 40 years old and have LI. I have tried every kind of cream (prescription and OTC) and several types of medication. You are right, there seem to be very few men with LI.

Top
#23413 - 12/06/08 03:42 PM Re: Men with LI? [Re: kevin246]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
There are lots of men with LI. It's just that men are less likely to frequent a message board like this. The majority of posters are parents, followed by affected women. Affected men are a distant third when it comes to posting here.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

Top
#23438 - 12/10/08 04:20 AM Re: Men with LI? [Re: Hearsay]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
I have a little boy with LI but can't quite call him a man yet, LOL! I agree with hearsay, I think men are less likely to frequent a message board smile I know of two people in Australia with LI, both are male.
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

Top
#23449 - 12/12/08 01:18 AM Re: Men with LI? [Re: brandynsmum]
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
I know of plenty of men with LI from all over the world. Most of us are happy to talk with others about it, but we don't always check a board like this...we have "manly" things to do! hehehe

My email is jeffgridley@yahoo.com.au if anyone wishes to chat...

Jeff (31 - Brisbane, Australia)

Top
#24151 - 04/09/09 12:48 PM Re: Men with LI? [Re: Kotick]
Paddybouns Offline
New member

Registered: 04/09/09
Posts: 1
"I recall my mom telling me that a lot of males with LI don't live long, does anyone know if that's true?" This is not the truth! My name is patrick, 29 from germany. i have also LI.

a great board by the way..

Top
#24784 - 07/17/09 10:43 PM Re: Men with LI? [Re: Paddybouns]
Andy DeAngelis Offline
New member

Registered: 07/17/09
Posts: 1
Here, here, Patrick! As a 30+ year old man living with LI, I can say that there are indeed a number of men that are blessed (yes, I said blessed) with LI. As a previous poster said, men seem to be less likely to post on forums such as this, but we are out there!

Feel free to drop a line if you would like to chat.

Andy

Top
#24791 - 07/20/09 10:51 PM Re: Men with LI? [Re: MISFIT2012]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Why would it be true? What would cause the short lifespan, especially if it is gender related. Are other organs besides the skin also genetically defective and may fail?

I hear there may be shorter lifespans for the rarest and most severe type of ich, harlequin. But I do not know the reason why.

Top

Moderator:  Laura Phillips 

Copyright 2012 Ichthyosis Information