The Author

Joachim Zuther, Lymphedema Specialist. Read more
Lohmann Rauscher
MediUSA

Tactile Medical

The Importance of Lymphedema Support Groups

 

In a support group, members provide each other with various forms of help, usually non-professional and non-material. They can be a crucial tool for individuals who share the common diagnosis of lymphedema to come together and share coping tips, experiences, news, and most importantly emotional support.

The help and information received in lymphedema support groups may take the form of providing and evaluating relevant information on treatment modalities, self-care, relating personal experiences, listening to and accepting others’ experiences, providing sympathetic understanding, and establishing social networks.

While providing important emotional support, support groups are more than just a safety net for the patient. In fact, they can even improve the physical health and wellness of participants. Members of an established support group not only serve as educators for individuals newly affected by lymphedema, but also inform the public about lymphedema, engage in advocacy, or can serve as a clearing house for disseminating news of important advancements or therapies.

The primary goal of most groups is to ensure that no one affected by lymphedema ever has to feel alone again.

Most support groups are facilitated by individuals who have personal experience with lymphedema and became advocates for others. These groups may have regularly scheduled meetings, or exchange information via online forums.

There are also professionally operated support groups, which are facilitated by professionals who do not share the problem of the members, such as lymphedema therapists, social workers, psychologists, or members of the clergy. In these settings the facilitator controls discussions and provides other relevant information; such professionally operated groups are often found in hospitals or lymphedema treatment centers.

Many times we receive phone calls and messages from individuals asking about lymphedema support groups in their area. If we are unable to locate a support group for the inquiring individual, we generally refer them to the National Lymphedema Network (NLN), which has a listing of ongoing support groups in their quarterly publication LymphLink and a Support Group Locator search function for groups in the U.S. and links to international support groups on their website.
The Support Group Locator can be accessed by clicking the “Support” tab on the top menu of this page.

Individuals can also list their support group with the NLN by submitting a support group listing application.

In order to increase access to support groups we urge you to list your support group with the NLN.

Other important resources include StepUp-SpeakOut, a support and advocacy group for individuals affected by lymphedema and Lymphedema People, a resource for people with lymphedema, created by people with lymphedema.

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15 comments to The Importance of Lymphedema Support Groups

  • I love that you wrote about this! I have a support group here in Hampton, Va and it’s hard trying to get patients to come out! I think support groups is a wonderful tool to help lymphedema patients cope and deal with everyday living! When I was in DC with the adocacy group it felt so good to be around others who understood what you were going through! Thanks!

  • Rhonda Stewart

    I am interested in joining a support group.

    • Joachim Zuther

      Dear Rhonda: Please use the “Support” tab on the top menu bar on this page. There is a link, which will bring you to the NLN’s support group locator enabling you to locate a support group in your area.

  • Jan

    Sorry to say that for some, support groups won’t do a thing. I know I don’t need a support group. What we need is a CURE. A support group won’t make the swelling go down so that I can wear my shoes, slacks and jeans, a support group won’t make the unending pain go away, and a support group won’t quell the rage & anger I have toward the doctor who stole my life from me. He never even mentioned the risk of LE. What kind of person does this! I never would have had the surgery had I known I’d have a 50/50 chance of getting the “gift” of LE, a gift NO ONE wants. I have not had even one happy or pain-free day since being turned into a sideshow freak by a charlatan who belongs in prison. My life is filled with non-stop worrying. What I’d like to see is regenerative medicine become involved in regrowing lymph nodes. I contacted Dr. Badylak at the McGowan Institute for Regenerative Medicine some time ago, and they were not doing any clinical trials at the time. Dr. Badylak has regrown sizable portions of esophagi, tendons, ligaments, bladders, urethras, abdominal walls, blood vessels, and hearts within animals and humans. Google the name “Lee Spieva” and you can read about how his fingertip was regrown with Dr. Badylakr’s help. LE is such a debilitating and life-changing condition that I wonder why groups that offer support aren’t pressing the issue of regenerative medicine, rather than offering a shoulder to cry on. Tea & sympathy won’t cut it. It is exciting to learn that Suzanne Somers is the first woman in the U. S. whose doctor used adipose stem cells to regrow her breast. It certainly seems that lymph nodes can be regrown if all of the afore-mentioned body parts already have been.

  • Elaine

    Hi, do you have any links to online support groups? I live in Japan and support groups are not part of the culture. Online lists I’ve seen tend to run to worst-case scenarios and often aren’t updated. I’d like to find some positive, practical support out there because I’m feeling pretty isolated. Thanks.

  • Tammy

    Jan, I understand your frustration, anger, and longing for a cure. I have been living with lymphedema for 14yrs and I have grown so self conscious about my right foot. I sit with my ankles crossed so that my left is covering the right. I primarily wear slacks so that its not as noticeable. If I wear a skirt or dress I wear fashionable booties with heels (which aren’t that comfortable for long term wear, however, they look good on, and I feel like I’m wearing what other fashion forward individuals wear. I miss the days of being able to walk into any shoe store and select any high heeled shoe that I wanted. Now I always have to make sure the shoe fits the swollen foot, and is comfortable, and looks good aesthetically. Regenerative medicine sounds like an awesome concept and I would be the first to sign up for the treatment if it became available.

  • Jan

    Tammy ~ I am happy to tell you that there FINALLY may be permanent help. Google “Dr. Marga Massey.” You will find a link to her website. I believe she is considered the leading plastic surgeon for lymph node transplantation in the United States. Lymph nodes are taken from the patient’s own body and transplanted to where they’re needed. This surgery was pioneered by Dr. Corinne Becker, a doctor in France who traveled to the U. S. to teach surgeons here. She has done 4,000 lymph node transfers in the treatment of both upper and lower-extremity lymphedema over the last 20 years in Paris. I e mailed Dr. Massey, and the next day I got a call from her office. I know what you mean about shoes, as I am a “shoe-a-holic” & have so many cute shoes, still in style, that I cannot wear. With any luck, I will be able to wear them again within a few months. The other good news is that there are some insurance companies that will cover this surgery. Dr. Massey said she works with patients who have Medicare, but not Medicaid.

  • HI Jan and others: I have had primary lymphedema for 52 years. Over those years I learned that every kind of processed food will cause swelling. As a result, I have tried – and done well at it – to not eat processed foods but eat the real stuff and your swelling will diminish a lot. I have not so much swelling now but I get a lot of pain. I have lymphedema in my feet, legs,thighs, belly, breasts, neck, and have a lot of discomfort in all those places. I hope you will try changing your eating habits to no processed foods or very little. Helen

  • mary kay radnich

    Helen, if you have not had Complete Decongestive Therapy with a certified lymphedema,therapist, look into doing it. It may reduce your pain. by eliminating the excess blood proteins. It certainly helped alleviate my pain.

  • Jan

    There is a new device being used for assisting in reconstructive surgery–a “near infrared” camera. What is so exciting about it is that it maps the lymphatic system, showing which lymph nodes are functioning ones, telling the doctor exactly where to perform bypasses. No more guesswork! There is a doctor in Austin, Texas at the Seton Institute of Reconstructive Plastic Surgery who performs this surgery. Her name is Dr. Elisabeth Potter. Main phone: 877.977.3866. You may also want to contact M. D. Anderson in Houston and ask if they are able to refer you to a doctor in your area. Their number: 877.632.6789

  • Jan

    Regarding the “near infrared” camera’s use for finding functioning lymph nodes to connect to veins, this surgery is not recomended for those whose lymphedema is in the leg–due to gravity.

  • Dale

    Comments are encouraging,alot of doctors know very little about this problem I was diagnosed 2 yrs ago this year,actually I went to the specialist after seeing a commercial on TV ,knew something was not right on top of that ,also going through Menapause! When it rains ,it pours ,for the most part I’m staying postive,trying to lose weight,day by day process ,and the summer months don’t help at all!!!!!

  • I’m NOT the actress. 😉 I am a registered massage therapist in Austin, TX and I’ve recently published a book about my own personal journey from Hashimoto’s Autoimmune Disease, Advanced Cervical Degenerative Disc Disease, Bursitis, allergies/asthma, 11 years of HORRIFIC pain after a broken spine and a subsequent injury. 12 doctors had no clue how to get me well so I took it on myself and today I am well. Along this path I acquired knowledge, a healing gift, and several pieces of equipment to heal ME. I used my acquired knowledge etc to test a theory on two clients with secondary lymphedema. We made good strides in one client and had a complete reversal in the other one, unfortunately she later passed away. I am NOT saying that I have found the cure but I am confident that I have some answers that can give us a starting point. I have no idea what to do with this information. If any of you feel compelled to give input I’m certainly willing to hear it. May God be with us. Kathy