Tips for Supporting a Loved One with Lymphedema

Lymphedema is an unwelcome diagnosis that can present more than a few challenges. Few people are prepared for the harsh realities of life with lymphedema. Although symptoms typically vary widely from patient to patient, the fact remains that lymphedema is not a temporary condition. Lymphedema must be managed to reduce its impact on a patient’s daily life and to help minimize its progression.

People who have received a diagnosis of lymphedema — whether due to post-operative damage to lymph nodes or vessels, radiation, chemotherapy, or for some other reason — will require support. Support can take many forms. It typically involves support from healthcare professionals and therapists who are trained in addressing this specific condition. Support also comes from friends, family members, and other loved ones.

Support Takes Many forms

Support is not just medical, physical, or even emotional, although all of these are important. Lymphedema patients may also require financial support to help them deal with the costs associated with treatment, lost work time, and the purchase of appropriate medical-grade compression wear.

Compression garments are key to managing the flow of lymph throughout the body.

Of course, graduated medical-grade compression wear is a key component of lymphedema management. By wearing compression garments and items as directed, a patient can take control of their condition, helping to minimize its impact on the patient’s lifestyle, while also helping to minimize its progression and the severity of symptoms.

Compression garments for the management of lymphedema are not inexpensive. That’s because they are, in essence, carefully engineered, crafted, and manufactured medical devices that must meet strict standards for quality, reliability, and effectiveness. They must also be comfortable enough to wear so that users will willingly wear them, as directed, for the appropriate lengths of time, every day. Wearing prescribed garments is crucial to the control of lymphedema.

Unexpected Financial Burdens

Many patients who receive a diagnosis of lymphedema will have recently battled cancer. A high percentage of women who undergo treatment for breast cancer, for example, will subsequently receive a diagnosis of lymphedema. Needless to say, cancer treatment alone can be highly costly. Being informed that still more bills are coming related to lymphedema management can be another, unexpected blow to some patients.

Fortunately, several organizations exist that offer financial help and other resources to patients who may be feeling overwhelmed by their new circumstances. Here are a few:

Patient Advocate Foundation

www.patientadvocate.org

(800) 532-5274

For 20 years, this patient support and advocacy organization has been dedicated to helping patients navigate the potential pitfalls of battling diseases such as cancer while also wrestling with insurance companies. They provide case management assistance, and for some qualified patients, financial assistance. Among other notable programs, they offer a Co-Pay Relief Program, Financial Aid Funds, and they maintain a National Financial Resource Directory. They have a strong track record of helping stressed patients deal with insurance companies, including navigating the appeals process when insurers refuse to cover expenses related to treatment. They even offer assistance in choosing a health plan that may work better for you. 

PAF’s Co-Pay Relief Program provides direct financial assistance to insured patients who meet certain qualifications. Funds are intended to patients pay for the prescriptions and/or necessary treatments. This financial assistance can help patients afford out-of-pocket costs associated with their care and treatment. Although they do not specify lymphedema as a supported condition, they do allocate funds for a number of specific types of cancer, including breast cancer, metastatic breast cancer, and bladder cancer, etc. 

Lymphatic Education & Research Foundation

www.lymphaticnetwork.org

(516) 541-3259

This nonprofit serves patients with lymphedema by focusing on education, advocacy, and research. The organization serves as a clearinghouse of sorts for everyone with a stake in understanding, treating, investigating, or living with lymphedema. 

National Lymphedema Network

www.lymphnet.org

(800) 541-3259

Among many other advocacy and education efforts, this extensive network of lymphedema professionals, patients, and advocates allows patients to apply for financial assistance to help cover the purchase of compression garments.

Comments

  1. I have to wear compression bandages at night. I wear a glove, followed by a Light compression sleeve followed by compression wrap bandages. I can find it locally but need a prescription and having trouble getting one. I have done this for almost 18 years. I had surgery for my lymphedema almost 3 years ago and he wants me to continue with the wrapping at night but doesn’t know how to write a prescription for me. Do you have any suggestions?

  2. I agree with all of the above. My problem at the moment is finding someone to consult about custom garments which I need to wear. Unless they fit properly they cannot help my condition, There’s no place near me that I can access for measuring, advice, or information in general. I have lower limb lymphedema and I feel alone in my quest for a solution.

    1. Author

      Hi Ruth,

      Get in touch with Lymphedema Products! We can help with finding & ordering custom garments as well as finding a certified therapist to help with measurements. Call us at 866-445-9674 to speak with one of our amazing customer service team members!

    2. Have you seen a physical therapy? Some PHD’s in physical do manual lymphatic treatments and will advise or measure your hose.

  3. Have you seen a physical therapy? Some PHD’s in physical do manual lymphatic treatments and will advise or measure your hose.

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