Can’t Afford Lymphedema Sleeves?

Are you or do you know a breast cancer survivor?  Please read today’s post and pass it on.  If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check. 

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors’ activities.  By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them.  They do this in honor and memory of their loved ones.

Crickett JuliusCrickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett’s Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

Rachel TroxellLympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve.  Rachel continued to build the company during her later recurrence.  Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application. 

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here

To help change the law so that this medical garment is covered by cancer survivors’ insurance, stay tuned for more about the Lymphedema Treatment Act when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn’t ask to get breast cancer, and the men and women who love them, there is now help for women who can’t afford lymphedema sleeves, a medically necessary garment not typically covered by insurance.  Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook

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49 Responses to Can’t Afford Lymphedema Sleeves?

  1. This is the BEST cause I have heard of in a long while!

    • whymommy says:

      Thank you! I love it, because it all comes from love. Every single bit.

      It only happened because Sue sent me an email one day, asking if I needed any help with anything ….

      • Mari Heise says:

        I recently reconnected with a friend that I have not seen since high school and found out her husband is also a cancer survivor and suffers from Lympedema. They live in Los Angeles and I am in touch with her through Face Book. She informed me that they are in a very tight budget and can’t afford the sleeves.

        I know this site is for women but are you ladies aware of any site that helps men with these same sleeves. He is retired and probably on public assistance and we know that does not help with this purchase. Can you help me or do you know of someone who can help me find a way to help him? I myself have been lucky and did not develop anything else after a double mastectomy followed by Large Diffused Non Hodgkin’s Lymphoma. The chemo worked on my body along with prayer, faith and a very supportive team of family and friends. I know very little about these sleeves other then the are very helpful for individuals with the swelling of Lymphedema.

        You can get in touch with me at puccenter@gmail.com

  2. I can’t believe that the cost of these aren’t covered by insurance- that’s just ridiculous. This is a fabulous program, and you’re fabulous for sharing the info!!

    • whymommy says:

      Well, I’m a little biased — I introduced them last Fall and kinda sorta set the whole thing up. Pass the word? We need to soak the net so people who are searching for financial help with lymphedema treatment can find it.

      Thanks!

  3. Stimey says:

    Wow, this is awesome!!!

    Until you experienced it, I never understood how hard the side effects of cancer treatment can be. Your work to educate people who don’t know and to help the people who do is incredible. You are fantastic.

    • whymommy says:

      I didn’t know. I really didn’t know. I thought that you had chemo, and it sucked, and then it was over and you went back to normal life.

      Whee boy, was I wrong.

      Thanks. Help me spread the word a bit?

  4. Susan, this is so amazing!!
    You are making such a difference in the lives of so many people–I am honored to have you in my life and so grateful that you are one of my most dear friends.

    I’ll certainly do what I can do spread the word about this incredible cause–
    amy

  5. First of all, the term “LympheDIVAs” is awesome. Second, I an shocked that something that is a medical necessity isn’t covered. Third, I’m happy that someone had the sense to make sleeves that are, well, cool!

  6. […] This post was mentioned on Twitter by twincident. twincident said: thanks to @whymommy I'm shopping LympheDiva's dragon tattoo sleeve http://ow.ly/3yF9E and I don't medically need one! -> http://ow.ly/3yFbf […]

  7. Niksmom says:

    Susan, you are such an amazing and resilient woman. I learn so much from you every time I read your posts and tweets. You’ve taught me about perspective, persevering, fighting the fight when all you feel like doing is hiding in bed, asking for and accepting help, and paying it forward.

    This program you’ve pioneered is so vital. I will share this far and wide, loud and clear. Gentle hugs and MAJOR kudos to you.

  8. I will share this where ever I can!

  9. WAIT- medically necessary but not covered?

    WTF?

    • whymommy says:

      Exactly. For many of us, it’s an inconvenience and another annoying expense. But for many, it means they can’t manage a permanent medical condition properly – and it affects their health, their mood, and the functionality of their limb. It’s a problem that needs a solution.

      Is the solution donations? Legislation? I don’t know. This is just a wee little drop in the bucket, but it’s a start. It will help somebody.

  10. Gena Morris says:

    what a great cause to support!

  11. I think this is an incredible cause that you’re spotlighting. As a sidenote, I know that one of the major insurance carriers here in California (Medical maybe?) does cover the cost of lymphedema garments IF you’ve gone done short stretch bandages and physical therapy for manual lymph draining and home exercise instruction. In order to get the garments, a therapist has to document and prove improvement and maintenance of the girth of the limb, but once that’s established the insurance will cover at least one garment, which isn’t enough, but it’s a start for some of our patients here. I think that what is being done through Crickett’s Answer and LympeDIVAs is fantastic and I’m bookmarking this post for future patients struggling to get the insurance coverage for their garments.

  12. Elaine says:

    Congratulations on pulling this all together.

  13. I’ve cross-posted this post in its entirety on my blog. I hope that’s okay.

    You’re awesome for putting this together. You’re awesome despite putting this together, but your hard work just confirms your awesomeness, in my opinion!! :D

  14. Jillian Jablonski says:

    I was recently diagnosed with lymphedema and may be in need of these resources! In the past my surgeon refused to give me a referral for a sleeve because I didn’t have lymphedema, not even for prevention. I was lucky enough that my mother bought me a sleeve, which is helping me keep the swelling in check until my next PT appointment. So this is a very timely subject for me!!

  15. Patti Lalley says:

    Susan – this is a wonderful cause – I have FB’d this post to spread the word !!!!!! ((hugs))

  16. Hooray, Susan! This will help so many people!
    I saw a woman wearing what I assume was a lymphedema sleeve on a tram in Melbourne last week. It was 40’C and the tram wasn’t air-conditioned, I thought it must be dreadfully hot and uncomfortable, and I remembered your lighter, pretty ones. Well done!

  17. jodifur says:

    You are amazing. I love that you are doing this!

  18. Susan, I just cannot thank you enough for spreading the word about our fabulous new program with LympheDIVAs. You are an inspiration and a role model, and Crickett would have loved to have known you! Crickett’s Answer for Cancer is just thrilled to be a part of this! Words can’t fully express our gratitude … this would NOT have been possible without you!

  19. Susan,
    I am SO excited and inspired about this project! I just had a conversation with my mom about her LympheDIVA sleeve and she’s now going to reach out to Crickett’s Answer for Cancer on behalf of the Central PA breast cancer fdn for which she’s a board member… so great things are ALREADY happening and many, many women’s lives are going to be improved because of your effort! xoxoxo

  20. Catherine says:

    Susan,
    Congratulations and thank you for this! I was surprised to see a post on Facebook with your photo and a link to this blog post – from an acquaintance in Pittsburgh, who had heard about it from one of her contacts. Just thought you’d like to know of another “sighting.”
    I’ll add a permanent link (to this blog posting) in the resources section of of our nonprofit organization’s website (I’m rebuilding the website so it won’t be this week…but soon).

  21. […] Mamalaw readers: this is a special post, cross-posted from Toddler Planet in support of my friends Susan aka Why Mommy and Sue at Laundry for Six.  If you don’t already read Susan’s blog, you don’t […]

  22. […] of the people who has made my life infinitely better is Susan from TODDLER PLANET. I always joke that Susan is made of Alpha Waves and awesome. Being around her is like being at a […]

  23. Your absolutely inspiring. With all that you have going on, you’re reaching out to help others; amazing. I don’t think of myself as a weepy guy – so no one ask my wife if I get teary at romantic comedies, because I’ll deny it. But when I read this, shortly after your last post, I’ll admit I got a teary-eyed.

  24. […] Can’t Afford Lymphedema Sleeves? New Help For Breast Cancer Survivors Posted on January 6, 2011 by admin This amazing venture by two DC blogging moms (who I am so thrilled to be calling friends!) was announced yesterday.  This post is cross-posted from Toddler Planet. […]

  25. cagey says:

    I’ve shared this post on my FB wall. Let’s get the word out, right?

    You are an inspiration, Susan.

  26. Colleen says:

    First of all, hugs to you. You are just awesome and I hope you know how much I admire and love you! Second, I wrote about this and linked to your story from Wrecklamation today.

  27. Khara says:

    Hi, I’m visiting from Minky Moo’s site. You truly are an amazing woman. What a wonderful thing you have done and are doing. Best wishes, prayers, and hugs to you! If you don’t mind I would like to post about this on my blog too. I hope you get lots of support!

  28. […] I had planned to tell you all about why I care so much about providing lymphedema sleeves to other cancer patients who can’t afford them.  I’m not sure I can hold it together […]

  29. […] Can’t Afford Lymphedema Sleeves? by Susan Niebur, of Toddler Planet Are you or do you know a breast cancer survivor?  Please read today’s post and pass it on. If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help. […]

  30. […] compression sleeves (also demystified below)! This is cross-posted from my friend Susan’s Tod­dler Planet blog post “Can’t Afford Lymphedema […]

  31. such a relief to find a resource like this. What a wonderful thing you are doing.

    Sending you warm wishes for for strength through treatment and overcoming your most recent diagnosis.

  32. Over $470 has been donated to Crickett’s Answer to help them purchase lympheDIVA sleeves beyond the first donation! You guys are wonderful!

    To donate with just a moment of your time, check out Motherhooduncensored.com and leave a comment — she’s donating a dollar for every comment on today’s post, up to $500!

  33. […] Now, five years later, I have a good friend with Stage 2 breast cancer. She’s younger than I am. Friend, Wife, Aunt, Funny Gal Pal, Lilly Pulitzer poster child, quirky spirit, witty raconteuse. But mostly, she’s Mommy to one of the cutest little girls I ever laid eyes on. There isn’t hyperbole enough to tell you how adorable this child is. But Jen is scrappy. And stubborn. So far breast cancer is losing the fight, while Jen blows raspberries at it and gives it the finger when her daughter isn’t looking. And there’s Susan. She’s younger than I am too. Surely you know Susan. I participated in my first Komen Race for the Cure in her honor, before I ever met her. Team Why Mommy. Susan is battling breast cancer again, for a fourth time in fewer than four years. She’s also a mom. She lives among dirt and noise so we are kindred spirits. When I finally met Susan I might have squeezed her a tish too hard, forcing her to recoil either in pain or in an effort to break free from someone she thought might be a fan girl nut job.In the midst of Susan’s fight, she’s thinking of others who fight alongside her. She’s doing one helluva job helping women who don’t have the means to get the treatment …. […]

  34. […] into goodness, she’s donating $1 per comment on that post to Crickett’s Answer for lymphedema sleeves.  I love that Jess, don’t […]

  35. […] didn’t even know what the term lymphedema meant when Susan Neibur of Toddler Planet blog told me she was working out a deal to have compression sleeves made available to women who […]

  36. […] And if you have a blog, go collect a button from Amie at MamaLoves.  She’s donating to Crickett’s Answer for every button that goes up in the blogosphere – and so is Leticia at Tech Savvy Mama, so […]

  37. I got to this post via Google and couldn’t stop reading! I will soon begin a health related career and can use all kinds of information! Thank you

  38. […] Susan is in the throws of her fourth battle with cancer.  But that doesn’t define her. She is so much more,  a kick-ass smart chick (an astrophysicists to be exact) wife, mother, friend, blogger… a woman who is truly the embodiment strength and grace.  In the midst of her own fight she stands side-by-side with others who fight. Susan is taking part in a clinical trial that we all hope will rid her of the cancer in her, and that will hopefully one day provide a cure for others as well. She has called upon some of her amazing friends as well -bloggers- whom I am ever in awe of* Sue, Leticia, Jesscia and MORE to spread the word to those in need. A partnership made in the hearts of women and spread throughout social media and beyond, with Cricket’s Answers and LympheDivas to help provide compression garments for Breast cancer survivors. […]

  39. […] is like, read WhyMommy’s written work or participate in her brainchild, working to give  Lymphedema Sleeves to cancer […]

  40. […] Click here to read Susan’s full post on her work to find a way to provide lymphedema sleeves to other breast cancer survivors who need them but can’t afford the cost. And, to read how her friends have jumped in to support her and the cause, click here. Susan’s passion for helping others through their cancer journey is her way of working to create a world with less cancer and more birthdays. Do you have a story of an American Cancer Society survivor and volunteer that you’d like to share? Post it in the comments below, or to the More Birthdays Facebook page. We’ll spotlight inspiring stories that highlight the many ways in which the members of our movement are working hard to create more birthdays. Tags: american cancer society, more birthdays, Susan Niebur […]

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