About Lamellar.org

This site: Maintained since 2004  Last Update: April 2010
Purpose: Education & Awareness
Topic: Ichthyosis & Related Genetic Diseases or Disorders - living with ich
Contact: mgznewyork(@)yahoo.com    -   Remove parenthesis
              info@lamellar.org

I welcome all who have come to visit this site. It contains a lot of information related to the genetic disorders "commonly" known as Ichthyosis.

There is so much more that needs to be accomplished through education, research and understanding when it comes to this disease and a lot more compassion and assistance offered to those who have to live with genetic skin disorders on a daily basis.


Please Note that before viewing some of the pictures. They are real life pictures and may be disturbing to some. 
To describe a disorder/disease, such as this without some visible reinforcement would only allow Ichthyosis to remain a hidden embarrassing secret.

People need to know this is a real disease, life threatening and diminishes a persons quality of life and capacity in so many ways. At times... leaving a person afflicted, immobile and helpless.

Update April 2010
Just getting back from a small vacation to Key West; The weather here has been very kind to my skin condition and it keeps on improving everyday. I expect to improve even more with the humid months approaching. Moving here has been a godsend and I am amazed at how much the climate has improved something I have been fighting with for quite some time in the northeast. My health, overall appearance and attitude has changed for the good, and I spend a lot less time "treating" my condition, not to mention; the embarrassment is gone and I wear shorts and tank tops on a regular basis. 
If I could do one thing before my time here on earth is over... It would be to; start a non-profit organization or retreat here in the south for others who need a respite from the north harsh conditions which exasperate and inflame Ichthyosis.
I receive a more questions about my condition since I have relocated here to the south. I will try to answer some right here on my update.
Yes, I still maintain my "no red meat" diet, eat only fresh when I can and avoid all processed foods.
Yes, I also still avoid cotton sheets and bedding (polyester sheets where not easy to find here in Florida) but I have managed to come across some. Glycerin based soaps are still the norm and I no longer have to use any type of tools to remove my skin. Desquamation and skin biuld up (Scales) is very minimal and I now use a moisturizer made up with 25% Glycerin, 25% Unscented Baby oil, 25% mineral oil and 25% water.... seems to work out pretty well. Which I could not do up North. The climate along with my improved healthier skin now allows the use of oils.
I received a comment from a web viewer explaining how she was using the glycerin on her face. She saw a remarkable difference and said " her husband liked the way the glycerin was removing her wrinkles.
... also another from someone who never though just simply changing the bed sheets to polyester could make such a difference and were pleasantly surprised.
I look forward to all of your emails and I try to answer each and every one of them as time allows. Although I am now in Florida and my condition has improved, I will still keep all the information posted on how I treat my "Ich" or how I have treated it in the past living in the Northeast. It has made a difference for a lot of people and I receive a lot of emails with simply just "thanks" which lets me know that all my efforts to post here and maintain this site has been a worthwhile effort. I will also try to get some updated photos of my current condition posted.
I encourage all of you reading this and who suffer from Ichthyosis to keep your head up and take each day... one day at a time, be patient with your condition and using the steps I have outlined in this site and following the diet, bathing and clothing regimen I have used... you will see results and learn to not just "have Ich" but learn to live with it.

 
Update Jan 2010
Here it is; 2010 already. As some of you know, I have been looking forward to an opportunity to relocate to Florida. "Good News"  I am updating this page from Winter Park, Florida.... Yippeee !
Yes, I am finally living in an area where the climate is more beneficial to me and my skin disorder. Having been here for just a little over one month, my lamellar has taken well to the change and I have seen an improvement already. I am still using glycerin and moisturizing as much as possible, and have had only one minor setback; I lost one of my big toe nails. I am hoping that with the new climate and conditions, it will grow back without any complications. And I am showing significant hair growth on my legs.

Over the years I have received many emails from people who suffer with Ichthyosis in one form or another. It saddens me that more can't be done, yet at the same time it humbles me to know that this web site has served many, educated some and touched the lives of those who always thought this condition was "singling" them out. You are not alone and "we" are not alone.

I will continue with my quest to "improve" my condition and I will continue to be a voice for Ichthyosis, share my experiences and do what ever I can to help those who request information or just want to discuss and share what it's like..."living with Ich".
-Marc

Update Oct 2009
My web traffic has increased considerably and I am glad my web site is so helpful.
I have received many emails from people from all parts of the world.
Unfortunately - The traffic has added to my bandwidth. If you could, please consider donating - I can't place advertising on the site because it would complicate matters (it is considered income)
The links you do see - are for further information & sites that make - this site possible...thanks.

The site was intended as a service to others suffering from "Ich" and educate others on how "Ich" affects a persons life and the obstacles they are faced with. So far it has done a tremendous job; given all of the input, feedback and emails I receive. Since the new site went live, Web Traffic has increased almost 500%.

Which is more surprising, is that the emails are split about 50/50... people with Ichthyosis and people who had no idea such a disease existed.

Suggestions for the site are welcome.

Update: June 2009. Our new site is finally up an running with a complete new look and design. Thanks to those who have supported my efforts to educate and bring awareness to this disease. I hope to some day have a community forum or bulletin board.
 

Below are links to pages to what I can only suggest to others who suffer the same disease. The links outline what I do and must do on a daily basis to treat my condition.

Home  |  Exfoliating  | Bathing  | Moisturizing | Daily Regimen  | Treatment  | Diet