Lymphangiomatosis & Gorham's Disease Alliance Forum / General Discussion / General

Forum Organization

Jayna — Tue, 12 Aug 2008 08:23:39 GMT

In an effort to keep the Forum topics organized, I've created a new section labeled Symptoms. I've moved all symptom-related posts to that section. None of your posts have been deleted - only moved.

Please continue to share and contribute. We all have a story and a voice and we're hearing from eveyone that this Forum has been exteremly helpful in making people feel that they are not alone in this battle.

Travel/vacation

jdahlson — Wed, 25 Jun 2008 08:04:39 GMT

Wondering what medical information anyone suggests taking with you when traveling away from home in case of an injury or hospitalization. I have a whole notebook of reports/x-rays/MRI's for my daughter but prefer to take what would be needed most if she needed medical attention. Any suggestions?

Court Decision on Rare Disease Insurance Case

Jack Kelly — Mon, 16 Jun 2008 22:47:59 GMT

Please visit the link below to review a favorable court decision in the State of Tenn. regarding coverage under the state's plan for a patient with a quite rare disease. There may be others, but this is the first one we are familiar with:

http://www.tennessean.com/apps/pbcs.dll/article?AID=2008805270328

Hello!

rockel — Thu, 12 Jun 2008 22:57:55 GMT

Hi i am glad there is a forum for this disease as i would like to talk to others who have been though this themselfs are with loved ones.my name is cody and i am living with both lymf and gorhamsi am 16 and just want to meet some other people who have these diesease's

just wanted to say hello

bugsmom — Wed, 11 Jun 2008 08:11:56 GMT

My name is Kristen and I just wanted to stop in and introduce myself. My 7 year old daughter has Atypical Gorhams Disease. I am looking forward to being apart of this site and meeting new people in similar situations.

Thanks & Welcome

Jack Kelly — Thu, 22 May 2008 05:47:30 GMT

To the worldwide community of lymphangiomatosis & Gorham's disease patients, families, friends, medical professionals, generous and caring donors, and all others interested in our cause, I would like to welcome you who come this way to visit our new Forum. Please visit whenever you have a question for which you need an answer; when you wish to follow a particular subject of interest; when you have information you think will be helpful to someone else's question; if you have an experience you wish to share, or, if you have any item of general interest to our community. Let the knowledge go forth!

On this occasion of our opening of the Discussion Forum please be aware of the rules of the road which I include again below.I would sincerely like to thank Sandy Goldfarb, VP, and Jana Sheets, Founder of the LGD Alliance, for all their very diligent effort which has produced this outstanding Forum. And, I would also like to thank our very fine developer, Gate39Media, for their excellent performance.

This is a safe, secure, and supportive environment where you can meet friends, ask questions, and share stories with others affected by lymphangiomatosis & Gorham's disease. We hope you'll enjoy the time you spend here.

Forum Guidelines

1. Forum participants should not post messages containing offensive
language, advertising, or solicitations.
2. If you would like to be able to post messages, you must first register.
3. The LGD Alliance reserves the right to edit, remove, or refuse
any postings which are deemed to be inappropriate.
4. All discussions and postings are divided into categories in order
to better help new users navigate. Please be sure to try to post
in the appropriate section.
5. The LGD Alliance will monitor this forum and its content and
provide technical assistance to users when necessary.
6. The LGD Alliance does not endorse or make warranties with
regard to the accuracy of any statements made on the Forum.

Please let us know if you have any questions, comments, or suggestions.

Sincerely,
Jack Kelly, President
LGD Alliance