Put this date in your Diary and sign the petition

I am reblogging this to ensure that everyone has signed the petition at the end.. There are millions who have Lymphedema but only just over 3000 have signed this petion… If you want to make a differnce please sign and share with your friends and on social media… It is very important that we show the goverments of the world that we need research, money for treatment and support. Now is your chance to be heard by signing this petition… SIGN… SHARE

My Lymph Node Transplant

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Put this date in your diary… March 6th 2016 will be World Lymphedema Day… The whole of March is Lymphedema awareness month, there is a push to have Lymphedema recognised by the various government health funds. In March there is the opportunity to give Lymphedema a voice. We need to speak out and tell our stories so that people understand what it is like to live with Lymphedema 24/7, if we do not speak out people will not understand how difficult it is to live with every day of your life. Lymphedema can be both secondary and primary, every person is different in how it affects them. Primary is caused by a fault in the lymphatic system that you are born with, sometimes it manifests at birth and in others it may start during puberty or even later in life. Secondary is caused by the removal of Lymph nodes during…

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6 thoughts on “Put this date in your Diary and sign the petition

  1. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  2. Hello Helen

    I’m afraid I am not well versed in the syntax and discourse conventions of the internet blog but there is some information you may wish to post regarding future treatments for lymphedema. I provide it to you for your consideration. I too have LE and find your blog as a good source for me. I suspect that you have built a sense for what works in blogs and what does not over last couple years and I hand full editorial control to you.

    There is a future treatment that I don’t see tracked in the past postings in your blog. I think it’s something that your readers may find intriguing. The potential treatment involves a form of retinoic acid. To put a very general label on retinoic acid, it is associated with vitamin A and as a layman I can’t embellish the specific differences. What is clear is that some experimentation is bringing to light favorable aspects of retinoic acid. A few papers have been published on beneficial aspects of a very specific variation of Retinoic acid called 9-CIS. In 2012 a published a paper in the American Heart Association publication Circulation showed a very favorable improvements in lymphatic function with mice as the recipients. That paper is available in its entirety at the first link below. At that time, I was surprised that this paper did not bring about a trial. Instead, there was much skepticism and a counter editorial published in that same issue of Circulation. It appears that the authors of that paper continued experimentation and recently published additional findings on 9-CIS. The second link is for the new paper which is only available as an abstract at this time. Again, the results for 9-CIS were quite positive and repeatable. As you will see if you read the paper, 9-CIS is already approved by the FDA as a treatment for other diseases. This means an extensive amount of testing and data is available about this drug. Of course, there is uncertainty and risk with any human trial, but a drug that has already obtained certification for use on humans is not such an unknown. Because LE day approaches there may be a small spike in the topic. I often wonder if a grassroots request effort from LE sufferers would aid in accelerating a trials for treatments for LE.

    http://circ.ahajournals.org/content/125/7/872.abstract

    http://journals.lww.com/annalsofsurgery/Abstract/publishahead/Prevention_of_Postsurgical_Lymphedema_by_9_cis.97188.aspx

    regards
    Paul

    • Thanks for that Paul.. I had not seen those studies before but I do know that some Drs have been trying various medications that are listed for other uses which seems to be the case with this.. This is a link to Dr Rockford who is also doing alot of work in this area http://lymphaticnetwork.org/news-events/new-and-emerging-treatments-for-lymphedema-a-presentation-by-stanley-rockso
      Thank you so much for including the links I will have a read and see what else there is along these lines.. As you say when medications are already past for human use it makes the next steps for its use in treating Lymphedema much easier.. LE&RN who have been initiating the push for Lymphedema awareness etc give money to research and work towards the goal of a cure one day.. It is so important .. I may share your comment as a post so others can read it easily when I have read the links properly … Thanks for this help

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