Stronger Together – An open letter to the lymphedema community

One of the major reasons that we wanted to start this blog was to bring together primary and secondary lymphedema in the same place. We understand that there are some differences in our challenges, but we will never lose sight of the emotional side that connects us. Encouragement towards one another makes us stronger as people and friends. We grow from our struggles and thrive with the success of managing our lymphedema together. It is discouraging to hear people complain that cancer-related lymphedema gets too much attention in the media. We understand that it is frustrating for people with primary lymphedema to feel ignored. The reality is that primary lymphedema is much harder to diagnose. It is less likely to have an obvious cause and it can show up at different times in a person’s life. However, we believe that the major point is often missed: LYMPHEDEMA IS BEING TALKED ABOUT IN THE MEDIA! Most people have unfortunately had cancer touch their life in some way. New research and treatments are constantly coming out to try and cure this horrible disease and that makes it a hot topic in the media. Because of this, when cancer patients talk about lymphedema as a side effect of their treatments, the media tends to be more willing to cover it. Our focus as a lymphedema community needs to be on getting the message out there as much as possible, regardless of the outlet in which it is coming from. There is an old marketing term called the “rule of seven” that says that people need to hear a message (ie the word lymphedema) seven times before they will remember it or take an action about it. Seven times! If that is true, we need to focus on getting our message and the word lymphedema out there as much as possible. We want to live in a world where all health care professionals know the word lymphedema. Even if they’ve heard about it from cancer patients, they are still more likely to think of it when they see a formerly “mysterious” swollen limb. That can ultimately lead to more primary patients being diagnosed right? There are over 140 million of us living with lymphedema, yet very few of us bring awareness to it. We need to join our voices TOGETHER to give lymphedema the spotlight it deserves. It’s not until lymphedema is a household name and recognized by the masses that it will start to be diagnosed regularly. We strongly believe that no matter how the message gets out there, it’s important to get it out there! We need to stop being upset if someone mentions cancer-related and not primary lymphedema. Instead, use it as an opening to talk about primary lymphedema also. We, the lymphedema community, need to get our stories out there and make them heard. One way we’re trying to do it is through a campaign to get lymphedema on the Ellen DeGeneres show! If you want to get YOUR story out there, make a 15 second video about why YOU want to see lymphedema featured on her show. Post it to all of your social media outlets with #LymphedemaOnEllen. We will make sure to help share it as much as possible. TOGETHER we can give voice to lymphedema and create a global movement! Love and respect always, Robin and Amy

8 thoughts on “Stronger Together – An open letter to the lymphedema community

  1. katepoet says:

    I do feel that those of us with primary lymphedema are minimized. There seems so little out there to help us. Our doctors shrug their shoulders and offer “water pills” which will only backfire.

    Some supplements may help including 100-200 mcg selenium daily and P-5-P, a B vitamin, 50 mg daily. Not everyone knows about these, and doctors rarely do. Water therapy can help and well as lymphedema therapy (see your local cancer center for this one). Every time we get an infection or take an antibiotic for an infection, we can balloon up again and the months-long process of losing the edema begins again.

    My hope is for vascular surgery that improves blood flow to help reduce the edema further.

    Some material is written about plastic surgery to reduce edema but very little is known about which doctors do it, how safe it is, and how much it changes.

    I appreciate your publicizing it and hope your discussion will expand on the subject this year.

    Best wishes!

    Liked by 2 people

    • ro81nm says:

      Thanks for your thoughts on our post! It is our goal to bring lymphedema into the light for both primary and secondary/cancer-related patients. Infections are problems for all of us. I think one of the biggest problems with primary is the difficulty patients have getting diagnosed. Hopefully by working together and getting information out there we will be able to change this!

      There are certified lymphedema therapists (CLT)s that can treat you all over, not just in cancer centers. You can check the NLN’s website, http://www.lymphnet.org, for help finding a therapist near you. Certified therapists listings are also on http://www.clt-lana.org and many of the training schools. Good luck and thanks again for reading our blog!

      -Robin

      Like

  2. Willa Condy Seymour. says:

    Primary or secondary the labels should not divide us. As a primary lymphedema person I am happy to see lymphoedema talked about. Kathy Bates, Mrs Florida are both inspiring. I try to inform and educate but it is hard to get the information out. I believe as long as we can get lymphedema talked about we will help all lymphies.

    Liked by 1 person

  3. katepoet says:

    I found that the low oxalate rice I was eating and the spoonful of beans I tried both caused greater lymphedema. Very frustrating to have so few foods that are safe.

    Like

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