Posted by: patoconnor | October 29, 2008

My Lymphedema and Lymphatic Disorder Support Groups

My Lymphedema and Lymphatic Disorder Support Groups


Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research.

We cover a far reaching range of topics that includes not only legislative proposals but how to work as an advocate with the press, the media; examples of letters to use for lobbying; idea tips for working with legislators and our links section has a tremendous number of direct links for advocacy resources.


Home Page:  


Children with Lymphedema

The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.




Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.



All About LymphoedemaYahoo Australia and NZ online lymphoedema support group.

Welcome to the All About Lymphoedema Support Group. A caring support group and extended family for those who experience the condition known as lymphoedema. Come join us as we learn not only how to live with lymphoedema, but learn how to overcome it and enjoy life to its maximum. Sponsored by Lymphedema People  




For our Google fans, we have just created this online support group in Google Groups:


Group email:

Description: Discussion and support group for those with lymphedema. I was born with hereditary lymphedema in 1952 (Milroy’s) and am also a nine year cancer survivor. Our sister site is Lymphedema People – Knowledge is empowerment, come join us in overcoming lymphedema.


 LIPEDEMA LIPODEMA LIPOEDEMANo matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.

Come join, be a part of the family!




While we have a number of support groups for lymphedema… there is nothing out there for other lymphatic disorders. Becausewe have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.


Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam’s syndrome, distichiasis, Figueroa
syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.




All right men, its our turn and its time. Let’s face it, we are years behind the women in understand and dealing with health issues that face us. This seems to be especially true in understand, dealing with and overcoming the physical and psychological issues that face us with lymphedema.

This is a safe haven, where we can lay it on the table, a place where we can “take charge” of this condition and move ahead with our lives.

Here we don’t have to worry about impressing the ladies (how could they be any more impressed anyway); we don’t have to be the strong silent type (everyone knows we are as tough as a mad marine and as solid as the rock of Gilbralter); we don’t have to be concerned with being macho (after all, we make even Dirty Harry cringe in the corner).

If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.


Pat O’Connor

My Life With Lymphedema

Very pleased to announce I start my own personal lymphedema blog this past week. It’s still young and in the formative stage, but you are all welcome to come, visit and even leave a comment if you like.

There will be lots of good information on lymphedema, but I also want to share my own thoughts and ideas on living and enjoying life despite lymphedema….kinda like lymphedema with a different perspective.

See you there!

My Life With Lymphedema – Blog  Also, if you have your own blog, please send the url – would love to list it in my links!   Pat

Teens with LymphedemaSupport group for teens and friends of teens with the condition lymphedema. This will be a safe forum where teens can meet others who share the same struggle with this condition. A place to find information, encouragement and hope. A home where you no longer have to feel like your the only one with lymphedema. Sponsored by Lymphedema People


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