Tag Archives: lrf

Lymphie Stories: Mamie F. and her Lift 4 Lymph Fundraiser

Submitted by Mamie F., August 2012.

It seems my story is very similar to others that have primary LE. My symptoms presented at around 24. My legs swelled horribly from the knees down. My doctor did not think much of it and attributed it to a venous problem. After about a year of complaints I finally got a sonogram of my veins – all was fine and then panic set it. I had every test possible and no one could tell me anything other than I was fine. I was finally diagnosed at 27, 3 years after the onset. I call that my JFK moment, I remember everything about that moment. I never thought that what I had would be with me forever I naïvely thought that once I figured out the issue I would pop a pill or get surgery and be fine.

The most frustrating thing is the lack of knowledge there is about the Lymphatic System and related complications. I also find that most people don’t get it. The reaction is  - so you swell a little no big deal. But we all know it is more than that. There are major self-esteem issues, discomfort, and not knowing what the future holds are all part of dealing with this condition.

Like everyone else I have my days where I feel sorry for myself but for the most part I look at the bright side. Going through this has made me a more empathetic person, a stronger person, it has also forced me to take responsibility of my health.

I am a Crossfitter and that is pretty much what I do in my spare time. Crossfit is a high intensity program. It’s not only a great way to stay in shape, the community is incredibly supportive. On September 8, I am hosting a fundraiser for the Lymphatic Research Foundation (LRF).  The event will involve a Crossfit Competition and participants will pay to participate. The winners will receive prizes which have been donated by local businesses and even some that have a farther reach. Information about the event can be found at www.lift4lymph.com The event is open to all and I would love to have some lymphie folks out there.

Click the image to enlarge the flyer.

This has truly been a labor of love for me. I feel that planning this event has helped me come to terms with this condition.  I want to be as involved as I can be in supporting the community of people that suffer from this condition. I was inspired to do this after watching Deborah Carson, a fellow Crossfitter, make it to the Crossfit Games and place 13th. The games are like the Olympics for Crossfitters. She inspired me, so I want to pass it on.

Event website: www.lift4lymph.com
Donations/registration: http://lift4lymph.eventbrite.com/
Contact: lift4lymph@gmail.com or frankmamie@gmail.com

 

Submit your story to the Lymphie Life! Use the contact form here to share your personal story of living with lymphedema, and, with your permission, it’ll be posted on the website.

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.

Raise money this holiday season with The Lymphie Life!

It’s the season of giving, and therefore the season of promoting the fundraiser for the Lymphatic Research Foundation! Currently, the Lymphie Life is 40% of the way towards the $2,500 donation goal, which is really really great. We still have 60% to go, but with your help, we can make it. Every little bit counts, and all proceeds go directly to LRF and lymphatic research.

Click here to raise money with The Lymphie Life!

Share the link with friends and family to give the gift of awareness and hope. Perhaps you can ask for a donation in your name in lieu of gifts this holiday….? :) Many, many thanks!

Love and warm wishes to you all this winter,
Alexa

Some updates: “Faces” Project & Donations

Hey, lymphies! I hope you’re enjoying this chilly October weekend. I have a couple updates to share with y’all:

“Faces” Project

The Faces of Lymphedema Project is something I started in January to celebrate Lymphies beyond their lymphedema, and to help the community get to know each other better. I finally received a submission to the Faces project, from the lovely Laura Sfiroudis. I encourage you to check out her story, and learn about this wonderful, ambitious young woman who studies health, loves to travel, and is a budding chef.

I would love for the rest of you to submit your stories to me to share on the site! If you’re interested, you can send a short biography and a photo (optional) to facesoflymphedema@gmail.com. For more information, click here.

Donations

I am still collecting donations for the Lymphatic Research Foundation. So far we’re 20% of the way to the $2,500 goal. Please donate if you haven’t already; even a donation as small as $5 can help! Pass the link on to your family and friends, post it to your Facebook or Twitter – get the word out! All the donations go straight to the Lymphatic Research Foundation, to help further research of lymphedema and other lymphatic diseases.

The link is https://lymphatic.ejoinme.org/thelymphielife. Thank you – your help is much appreciated!!

Donate, donate, donate!

Hey, lymphies!

This is just a reminder to please donate to the Lymphatic Research Foundation by checking out The Lymphie Life’s “virtual walk” page here, or click here to make your donation. My goal is to raise $2,500 for LRF, and as of this posting, we are 10% of the way there!

Here is the link for the virtual walk: https://lymphatic.ejoinme.org/?tabid=279928&joinme=8601. Please pass the link along to your friends and family, post it on Facebook and Twitter, do whatever you can to get the word out and spread awareness and hope for those living with lymphedema and lymphatic diseases. Every little donation matters.

Thank you!!