I was born with lymphdema in 1952 and have actually traced it in my family through the late 1800's. There are a number of us (siblings, cousins) that have it.
In 1995 I was diagnosed with mixed B-cell lymphoma and in 2000 with lymphoplasmacytic lymphoma.
I am also the founder of the website Lymphedema People and sponsor numerous online Support Groups for lymphedema, lipedema and lymphatic disorders
Yahoo groups include:
Advocates for Lymphedema
Our frontline online support group for lymphedema. Provides community, support, information and advocacy on behalf of patients from all corners of the globe. This is our most active group with daily posting, exchanges of information and encouragement. Come - join - us - today
http://health.groups.yahoo.com/group/Ad ... ymphedema/
Children with Lymphedema
A very special support group for children who have lymphedema and their parents. Tremendous source of community, support and information on the day to day care of children with the condition.
http://health.groups.yahoo.com/group/ch ... ymphedema/
Men with Lymphedema
Support group for men who have lymphedema. Brotherhood, comradere, support and information - a safe place to let the hair down and ask questions and interact.
http://health.groups.yahoo.com/group/menwithlymphedema/
Teens with Lymphedema
A special group for teenagers who face difficult issues during their teen years in how to cope with, live with and most important to learn how to live a rich and rewarding life despite having lymphedema
http://health.groups.yahoo.com/group/Te ... ymphedema/
All About Lymphangiectasia
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. Works inconjunction with our Xanga blog Lymphangiectasia
http://health.groups.yahoo.com/group/al ... giectasia/
Lipedema, Lipodema, Lipoedema
Millions of people are afflicted with this almost totally misunderstood and frustrating medical condition. Articles relating to living with lipedema, treatments and other peeer reviewed information. Works in conjunction with our online support group Lipedema
http://health.groups.yahoo.com/group/li ... lipoedema/
Lymphatic Disorders Support Group
Works in conjunction with our blogs on Disorders of the Lymph System and Developemental Disorders of the lymph system. All lymphatic conditions included with special emphasis on lymphatic malformations, lymphangiomas, cystic hygromas, Castleman's Disease.
http://health.groups.yahoo.com/group/ly ... disorders/
All About Lymphedema
Our frontline Google support group for lymphedema. Information, support, community and help.
http://groups-beta.google.com/group/All ... Lymphedema
I also have group on MSN and Google. Finally I maintain several dozen other sites ranging from medical conditions, flowers, history:
My Life with Lymphedema
Frontline personal blog on lymphedema which includes many inspirational articles and writings as well. Find information, support and most importantly hope. Life is not a requiem for that which we can not do, but a celebration for that which we can.
http://mylifewithlymphedema.blogspot.com/
Developmental Disorders of the Lymphatics
Information and resources for medical conditions relating to the developement of the lymphatic system. Clearing house for peer reviewed information and news. Includes all disorders of lymphatic dysplasia
http://lymphsystemdisorders.blogspot.com
Edema and Related Medical Conditions
Clearinghouse for peer reviewed information and articles relating to edema (swelling) related medical conditions. Includes conditions, causes and treatments
http://edemainformation.blogspot.com/
Lymphedemaville - AOL Blog
This is about journeying through life with a medical condition called lymphedema. ... What it is, what it is like, what to expect , how to treat the condition, and most important discovering hope in having a rich and wonderful life despite lymphedema.
http://lymphedemaville.wordpress.com/
Disorders of the Lymph System
Peer reviewed information on disorders relating to the lymph system, lymph nodes and lymph vessels.
http://lymphaticdisorders.wordpress.com/
Bacterial Infections
Information on all types of bacterial infections. Peer reviewed new and information on causes, prevention and treatments.
http://bacteriainfections.blogspot.com
Antibiotics
Complete guide to antibiotics. Clearinghouse of peer reviewed information on what antibiotics do, what they treat and how they work and most importantly when or when not to use them.
http://antibioticinformation.blogspot.com/
Fungal Infections
Clearinghouse of peer reviewed news and information on all types of fungal infections. Causes, Symptoms, Treatments and Prevention are covered.
http://fungalinfections.wordpress.com/
Cellulitis
Clearinghouse for the infection known as cellulitis. Peer reviewed news and information on its causes, treatments, prevention and complications
http://cellulitisinfections.blogspot.com/
Trisomy Disorders
Peer reviewed information on chromosome disorders. These include Down Syndrome, Turner Syndrome, Klinefelter Syndrome, Prader-Willi syndrome, 22q11 deletion syndrome, Cri-du-chat (cat cry) syndrome, Turner's Syndrome and more.
http://trisomydisorders.wordpress.com/
Lipedema
Millions of people are afflicted with this almost totally misunderstood and frustrating medical condition. Articles relating to living with lipedema, treatments and other peeer reviewed information. Works in conjunction with our online support group Lipedema
http://www.xanga.com/lipedema
Lymphangiectasia/Xanga
Medical condition caused by the dilation of the lymphatic vessels. Peer reviewed medical information and news with personal stories about how patients can cope with this little understood condition. Works inconjunction with our online support group All About Lymphangiectasia
http://www.xanga.com/lymphangiectasia
Lymphangiectasia
Medical condition caused by the dilation of the lymphatic vessels. Peer reviewed medical information and news with personal stories about how patients can cope with this little understood condition. Works inconjunction with our online support group All About Lymphangiectasia
http://lymphangiectasia.blogspot.com/
Lymphedema
Another one of our blogs on the medical condition lymphedema. Peer reviewed information on causes, treatments complications and personal accounts of coping with lymphedema
http://www.xanga.com/lymphedema
Lymphedema
Another one of our blogs on the medical condition lymphedema. Peer reviewed information on causes, treatments, complications and personal articles on coping with this little understood noncurable condition
http://lymphedemahome.livejournal.com/
MRSA Information
Peer reviewed information on the causes, treatments, complications and prevention of this emerging and potentially deadly spreading infection
http://mrsainformation.blogspot.com/
Men's Health - Xanga
Articles and information relating to a broad spectrum of medical and health issues relating to men.
http://www.xanga.com/Mens_Health
Alternative Medicine and Lymphedema
In this blog, we will explore all the various alternative medicine treatments used or proposed for lymphedema and whether or not they are both effective and save.
http://alternativemedicinelymphedema.blog.com/
Cutaneous Lymphoma
As a thirteen year survivor of lymphoma, this is of special interest to me. This is a cancer that is increasing in the numbers afflicted with it and until recently not well understood. Peer reviewed information on symptoms, diagnosis, treatments and compInformation and resources for medical conditions relating to the developement of the lymphatic system. Clearing house for peer reviewed information and news
http://cutaneouslymphoma.blogspot.com/
Kaposi’s Sarcoma
A rapidly emerging form of cancer. Clearinghouse of peer reviewed information on causes, symptoms, treatments, diagnosis and complications.
http://kaposissarcomainfo.blogspot.com/
Merkel Cell Cancer
Clearinghouse of peer reviewed information on this emerging and rapididly increasing form of cancer. Diagnosis, Treatments, Management and complications
http://merkelcellcancer.blogspot.com/
Burkitt's Lymphoma
This information is about specific types of non-Hodgkin lymphoma known as Burkitt lymphoma and Burkitt-like lymphoma
http://burkittslymphoma.blog.com/
Ovarian Cancer
Complete clearinghouse of information relating to ovarian cancer. Our works include, treatments, complications, clinical studies, peer reviewed information. symptoms, diagnoses
http://ovariancancerinfo.wordpress.com/
Due to the collapse of my health, I haven't been able to maintain them as I used to, but do limited updates.
My other "lymph" activities include the NLN (LSAP) and the Lighthouse Lymphedema Network, here in Georgia.
If I can be of help, please feel free to contact me.
Pat
