Category Archives: Lymphedema news

Help Fellow Lymphie Raise Money for Multiple Sclerosis

Jim Miller has suffered from lymphedema for the past forty-six years and has been a very encouraging and inspiring voice on this blog since it began over a year ago. He continues to infuse a certain spirit of optimism and confidence both on- and off-line by living an active lifestyle and participating in fundraisers for multiple sclerosis and childrens’ hospitals.

Most recently, Jim has committed to participating in the Colorado-Wyoming Chapter of Bike MS, where he will be riding 150 miles on June 30th and July 1st to raise money for multiple sclerosis. Proceeds from this event are used to provide programs and services to over 11,000 individuals in Colorado and Wyoming living with MS, as well as fund critical research projects in hope of finding a cure. On his personal page, Jim says,

I am participating in the MS150 bike ride again because many of us – me, you, your neighbors, friends at work, school, church and social life – have been surprised with medical challenges in our lives. Whether you face MS or have faced cancer, Parkinson’s or Lymphedema, a community that provides personal support as well as fund raising and research support makes a huge difference.

I’m asking you to help with a tax-deductible donation to the National MS Society in my name to fund research, advocate for change, and help people with MS and their families lead powerful lives. I believe in the work they do and want to be part of it.

Multiple Sclerosis affects people in the prime of their lives, between the ages of 20 and 50. Every hour someone is newly diagnosed with multiple sclerosis. More than 2.5 million people worldwide live with this unpredictable disease. Having multiple sclerosis means that you may suddenly have blurry vision, that your memory will fail you for no apparent reason, or that you may not always be able to walk, let alone ride a bike. The symptoms of MS are different for everyone – the only certainty is that it will affect yet another person every hour of every day.

Some of you also know that I will be riding with a condition known as lymphedema. You can learn more about it at www.lymphedemacommunity.com or the National Lymphedema Network (www.lymphnet.org). My objective is to help others I meet understand the challenges of lymphedema as well as MS, and that with either condition it takes much personal attention and dedication to keep focused on a positive future.

If you would like to support Jim in his bike ride as well as help raise money for MS, please consider making a donation in his name by clicking here. Thank you for your support!

Cautious (but big!) Hope

Some good news for breast cancer patients with secondary lymphedema:

On March 6th – Lymphedema Awareness Day – researchers presented investigational pre-clinical data on the first potential pharmacologic agent used in combination with surgery for the treatment of breast cancer associated lymphedema (source). In layman’s terms, this team of researchers have gathered data that shows lymph node transplant surgery could potentially maybe someday be a real thing, thanks to a vascular endothelial growth factor C (VEGF-C) called Lymfactin.

How would it work?

The therapy with Lymfactin involves a surgical operation where a lymph node flap is harvested from the patient’s lower abdominal wall and injected with Lymfactin, which leads to the transient presence of the adenovirus containing the VEGF-C gene. The lymph node is then transferred to the axillary region.

When the growth factor VEGF-C was injected into tissues of mice and later pigs, there was growth of new lymphatic vessels and restoration of lymphatic architecture. When combined with lymph node transfer, the administration of VEGF-C yielded an 80% improvement in mice with lymphedema. Researchers are developing a treatment that would enable a higher transfer success. Plans to start a phase I/II study in breast cancer patients are set for as early as next year (!).

Wendy Chaite, the founder of LRF, was quoted in the article as saying this treatment is “very promising,” and cites the current lack of any advanced treatments for lymphedema as making this research “all the more important for those who suffer from this condition.”

The implications of this study are huge. Currently, the only treatment options for lymphedema focus on minimizing swelling, controlling pain, and preventing infection. We’ve got wrappings, massages, compression.. nothing to cure or alleviate lymphedema, only maintain it. This condition is way too common to be ignored as much as it is. Let’s all hope that research continues to develop in this positive direction!

What do you think about this news? If it were to become an accessible and reliable treatment, would you do it?

The source for the information in this post came from a press release on MarketWatch.
For more information about Lymfactin, visit the Laurantis Pharma website.

Happy Lymphedema Awareness Day!

 

March 6th is Awareness Day for us lymphies, a day to honor and celebrate all who are living and coping with the disease. It’s also a day to show the world that this is no longer a rare condition, and that we need proper treatment, coverage, and support.

 

How can you participate?

  • Show your support by wearing turquoise or a butterfly, the official colors and symbol of lymphedema.
  • Post on Facebook or Twitter about Lymphedema Awareness day to start a discussion about living with lymphedema and the care we need.
  • Tell a fellow lymphie that you appreciate the courage they’ve shown in living with their disease.
  • Write a letter to your insurance company to appeal denial of coverage.
  • Write to your Senator to get a resolution passed that will make March 6th the official day of awareness.
Enjoy today – prop your feet up and relax! You earned it, lymphie.

C4YW 2012: Annual Conference for Young Women Affected by Breast Cancer

Many of you have lymphedema as a result of breast cancer, so when I heard about C4YW, I knew I had to share it with you.

The conference is specifically for young women with breast cancer, as well as those who support them. It’s presented by Living Beyond Breast Cancer and Young Survival Coalition, and sponsored by the Susan G. Komen foundation

.Have you heard of this? I was just made aware of it and, although my lymphedema is not a result of cancer, it sounds like an awesome event that’s definitely worth attending.

When: February 24 – 26, 2012

Where: New Orleans, LA

Register early to reserve your spot at the upcoming conference! It looks like it’s going to be a truly amazing time, with lots of workshops and speakers and other special events. If you’re thinking about attending, please let me know!

For more information, check out their website at http://www.c4yw.org/.

Fellow Lymphie Jim Miller hits the trail

For a lot of us, having lymphedema feels like a crutch. It’s a burden on so many aspects of our lives that it’s all too easy to get bogged down and feel like we’re limited by this condition. However, one of the readers at The Lymphie Life is proving otherwise.

Jim Miller

Jim Miller has had primary lymphedema in his left leg for about forty-five years, and in his right leg for the past two. Despite these physical limitations, Jim has kept incredibly active by hiking and biking in his home state of Colorado, as well as traveling around the world.

At the end of the month – September 27th, to be exact – Jim will be biking down the coast of Oregon with his wife, Marsha. Their trip will start at the Columbia River, and end 390 miles down at the California state line. He expects the ride to take about seven days (give or take a few) and will be posting about their journey on his blog, Bucket List Minus One.

It’s difficult to say how this will affect his lymphedema, as Jim’s been cycling for so many years now that it’s pretty much all it knows. As he points out on his blog, the National Lymphedema Network advises against strenuous exercise, but he will be ready to modify his trip and include extra MLD massages and compression wrapping if there are any signs of distress.

Jim, I don’t know much about biking, but I’m wicked impressed that you’re doing this.  I wish you and your wife the best of luck, and happy trails!!

To follow Jim’s journey down the Oregon coast, check out his blog at http://oneoffthebucketlist.blogspot.com/.