5 responses to “What would you like to see on the site?”

1. 

   rosie

   October 13, 2012

   I would like to see an article written by one of your followers that details his or her experience with Lymphedema Support Groups that meet face-to-face. Since so much of the support for LE takes place online–and thank you Alexa for being such a positive force–I’m wondering how the experiences compare.

   I’m a member of the National Lymphedema Network and I just received the latest copy of their newsletter, LymphLink. The themes are: Medication and Nutrition. Now those two topics could be potential blog posts for your site.

   As I mentioned on the “faces project” tab on your site, I want to start a face-to-face support group and a blog about my experiences with Lymphedema. So if anyone has any suggestions on how to start either one, please let me know.

   Additionally, I’ve been meaning to mention to you that recently I had the pleasure of meeting another lymphie who you profiled on your site, Mamie. It was amazing to meet someone my age, who lives nearby me, and who has the same type of Lymphedema as me. We shared our “war stories” while we participated in the 3rd Annual Walk to benefit The Lymphatic Research Foundation–whose mission is to raise awareness and funds for Lymphedema and other Lymphatic Diseases. The walk took place on an absolutely gorgeous day in September, in Eisenhower Park on Long Island. My mom and Mamie’s friend, Sara, accompanied us–altogether “Team Lift4Lymph” and I raised over $3,500 (mostly due to Mamie’s very successful fundraiser a few weeks prior)!

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   1. 

      alexae67

      October 31, 2012

      I’d love to learn about support groups as well. I spoke recently with my lymphedema therapist about starting a group in my area, although it hasn’t been developed beyond that. I think it would be a great idea, not just for support but to offer some education as well. (If anyone has experience with this, please let us know!)

      That’s WONDERFUL about the LRF walk!! I’m so glad you got to meet up with one another and raise money. You gals rock! I’d love the opportunity to meet some fellow lymphies face-to-face.. perhaps one day we can organize a meet-up. Until then, it’s our tried-and-true online support.

      Medication and nutrition are definitely things worth delving into. I’ll do some research into them and maybe get a post or two out of it. Thanks for the suggestions! As always, hope you’re well.

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2. 

   julie

   October 22, 2012

   I appreciate your blog. My 17 month old daughter has primary lymphedema in all four limbs. It will be years before she can talk to me about what is bothering her! We have weekly lymph massage sessions and I do it at home a few days a week. Your writing about compression garments etc is very helpful. I don’t have any suggestions; whatever thoughts you have to share helps me better understand my toddler’s future :)

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   1. 

      alexae67

      October 31, 2012

      I’m sorry to hear about your daughter but it’s great you’ve already begun treatment – that’s going to help her so much and give her a good foundation to continue lymphedema management when she’s older. Best of luck to you and your daughter! It sounds like she’s got a loving, supportive family :)

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      1. 

         julie

         November 1, 2012

         Thank you :)

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