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National Lymphedema Network

Lymphedema support group and discussion community

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National Lymphedema Network

Patients and caregivers are “Experts by Experience”

Brian's journal

Brian

patients-and-caregivers-are-experts-by-experience

200233

Dear members, Today we are excited to announce that Inspire and Mayo Clinic have launched “Experts by Experience” – a series of columns written by patients and caregivers from around the world. The kickoff column is Kindness at the Margins for Caregivers, by patient advocate Renata Louwers. A main purpose of the series is to bring the patient perspective to people who can learn from ... Read More

National Lymphedema Network

Gene testing, precision medicine, and shared information

Brian's journal

Brian

gene-testing-precision-medicine-and-shared-information

200233

Dear members, How should we be thinking about our genetic information when it comes to disease? It’s a question many of us are asking here on Inspire, sometimes very intensely, depending on the nature of the disease. The information we get from our genome can have a direct impact on so much, including how, or if, we can be treated for certain types of disease -- that is the nature ... Read More

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National Lymphedema Network

Truncal oedema post mastectomy

In: Breast cancer related lymphedema

Ingridsunique

truncal-oedema-post-mastectomy

200233

I have three areas of oedema post mastectomy, the truncal one needs to be compressed apparently but the oedema stretches from the scar down to naval and I can’t find any garment to cover it. I am not thin! I have had three sessions of MLD which has been helpful. Are there any thoughts on what I can do, daily strapping with practioner with tape at £60 per day is not feasible for me ... Read More

National Lymphedema Network

Hand-me-down compression gloves

In: Treatment and garments

ShellPhi

hand-me-down-compression-gloves

200233

Hi, friends. I realize this will be an odd request! But having exhausted all conventional measures with my doctor and occupational therapist, I'm taking things into my own hands. I travel extensively for work (ministry) and just don't want to let cancer take that from me too! I have a complicated case of arm/hand lymphedema. When I wear compression sleeves and gloves to keep the swelling ... Read More

National Lymphedema Network

Compression hose cutting in at the knee

In: Treatment and garments

Ameshart

compression-hose-cutting-in-at-the-knee

200233

I have primary lymphedema and wear 30 to 40 compression hose during the day. I’ve been told I should have custom made but cannot afford them. So my therapist measured me for the correct size of “off the shelf” hose. Even though they are the right size they are cutting into the inside of my knee. Does anyone have any ideas for preventing that? Thanks in advance ... Read More

National Lymphedema Network

Flexitouch vs lymphapress pump

In: Treatment and garments

Vicki32017

flexitouch-vs-lymphapress-pump

200233

Looking for any information, recommendations or experiences with flexitouch pump or lymphapress pump -good or bad. I have secondary Lymphedema of both legs extending to lower abdomen from pelvic lymph node dissection. Thanks so much, Vicki ... Read More

National Lymphedema Network

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200233

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

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National Lymphedema Network

Treatment and Garments

In: Treatment and garments

PSF56

treatment-and-garments

200233

Hi! So glad to find supprt for Lymphedema. I have been fighting this for about 10 yrs so far. Recently I got a perscription for treatment at one of our nursing homes for out patient therepy. To find out that I have to pay mostof this out of my pocket. I am not rich, and am on disability because of it. What do I do to help myself? I have read where you suggest getting an advocate to ... Read More

National Lymphedema Network

Counseling for Depression related to Lymphedema

In: Living with lymphedema

DrBEP

counseling-for-depression-related-to-lymphedema

200233

Despite the fact that I think my lymphedema is pretty well managed, I'm feeling symptoms of depression. I think it's related to the frustration of having to put on uncomfortable compression day and night and having changes in my lifestyle that are not positive. I'm also feeling sad because my body image has been permanently altered. I feel like everything is just "too much" and I constantly ... Read More

National Lymphedema Network

NEWLY DIAGNOSED

In: Living with lymphedema

AllySupreme

newly-diagnosed-477

200233

Hi Everyone, My story is so convoluted, you will have a hard time belie,ving it. About 2 years ago, I noticed a strange thing on the back of my left leg. I immediately went to the Dermatologist. He did two Biopsies, which came back as 2 different Bacterial Infections. He Prescribed Antibiotics, which I took for fourteen days, without much result. He then prescribed an ointment, which ... Read More

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