We are so excited to share the highlights from the very first annual World Lymphedema Day. March 6 is dedicated to honor lymphedema patients and this year, this great day was made official by the US Government. World Lymphedema Day is meant to promote awareness to this condition and show appreciation to everyone who is affected by lymphedema. More than 150 million people suffer from lymphedema worldwide and it is time that we find a cure.
One of the leaders in lymphedema advocacy, the Lymphatic Education & Research Network (LE&RN), led the effort to officially dedicate March 6th as World Lymphedema Day. This organization strives to raise awareness and educate people about this condition and has worked side by side with Kathy Bates to get the voices of lymphedema patients heard.
Senators Chuck Schumer and Chuck Grassley introduced a Resolution to the US Senate to recognize March 6th as World Lymphedema Day. Many lymphedema patients shared their stories and talked about how they were celebrating the day, urging others to spread the message.
Many people are aware of the fight against cancer, but few know that many breast cancer survivors develop lymphedema as a result of treatment. Others are born with it. Lymphedema can develop in the arms or legs and symptoms range from mild to severe. With so many people suffering from this condition, it is surprising that so few doctors are aware of it. This results in many patients going un-diagnosed for much of their life, and their symptoms worsening without proper treatment.
March is Lymphedema Awareness Month. We urge you to take some time to learn more about lymphedema, talk about it with your friends and family, and see how you can help make a difference this month. To show our support, we are giving away one Juzo Soft compression garment of your choice! The winner can choose one of the following in any size, color and compression level: knee highs, thigh highs, pantyhose, leggings, gauntlet, glove or armsleeve.
Academy Award winner Kathy Bates has earned 40 wins and 68 nominations including Emmys, Golden Globes and an Oscar. Over the past year, Kathy has taken on a new project – becoming the Lymphatic Education & Research Network’s (LE&RN) National Spokesperson. After being diagnosed with ovarian and breast cancer, Kathy Bates underwent a bilateral mastectomy to remove 19 lymph nodes from her left armpit and three from right. She developed lymphedema shortly after and has to wear a compression armsleeve for the rest of her life unless a cure is found.
To help spread awareness of breast cancer and lymphedema this month, we are giving away an armsleeve each week. Check out the giveaway at the end of this post to enter for your chance to win.
Every day, Kathy connects with others suffering from lymphedema and their families by writing letters to thank them and comfort them. She has made great strides in building awareness and education. She recently spoke at a two-day NIH symposium that took place on September 29-30. Bill Repicci, Executive Director of LE&RN, believes that this conference is a turning point in the field of lymphatics.
In her speech, “Lymphedema: The Human Side,” Bates explains that she was shocked to find out that millions of people suffer from lymphatic diseases, not just breast cancer survivors. Many people are born with it or develop it later in life. With about 10 million Americans and hundreds of millions worldwide, it is surprising that most primary physicians haven’t heard of this condition. To make matters worse, many people are not even aware they have lymphedema and suffer in silence. Without treatment, lymphedema symptoms can get worse and infection may occur, which can cause serious complications.
Many doctors who are aware of lymphedema don’t understand the severity of the condition, brushing it off as a “cosmetic issue” or blame symptoms on obesity or other causes. One woman suffered for eight years before being diagnosed with stage 3 lymphedema. Another patient, Marie Apodaca, was told by her doctor that she had to lose weight. She wasn’t diagnosed until she was accidentally hit with a cardboard box on her leg, which caused a clear liquid to drain out of her leg instead of blood. After months of therapy, Marie was able to remove 35 lbs of lymph from her legs.
Managing symptoms is no walk in the park either. Finding a lymphedema therapist isn’t easy. Since there aren’t many, it can be hard to find one that’s available or is located in your area. This can result in long commutes, which can aggravate symptoms. Zalee Harris who suffers from severely swollen arms can’t get regular treatments because of a long waiting list, causing her to be in more pain.
LE&RN focuses on raising awareness and education, but even more so, encouraging people to stop hiding their condition and share their story. Kathy took the Face of Lymphedema Challenge to inspire people to find comfort by sharing stories and to know they’re not alone. Dancer Pearl-Ann Hinds developed LE and decided to choreograph a dance dedicated to lymphedema called “Hello World.” She says “If I continued to hide the reality, the power to change the legs of future generations would be lost.”
Seven-year-old Emma Detlefsen was born with lymphedema in both legs and often battles infections that cause her to be hospitalized. This inspiring seven-year-old appeared before the NY State Legislator last year and convinced lawmakers to pass a bill for research funding that had been languishing for 12 years. She was awarded with the LE&RN Youth Ambassador Award on September 19th at the 5K Walk to Fight Lymphedema & Lymphatic Diseases on the Brooklyn Bridge. Kathy hopes that by bringing Emma’s message to us, it can inspire “even one of us” to accomplish her challenge and hopes you will join the fight for education and research.
Mediven Harmony Armsleeve Giveaway
For Breast Cancer Awareness Month, each week we will be giving away a compression armsleeve. Every week, we will feature a different brand. This week, you can win a Mediven Harmony armsleeve in your choice of compression level, size and color. To enter, log in with your email address or Facebook information below. Then, choose how you would like to enter: You can answer a question, leave a comment about the blog post, follow us on Twitter or tweet a message. To tweet the message, click the “Tweet” button then go to your profile. Click on the timestamp on the tweet and paste the url in the box below. Click here for more help. Good luck!! Remember, you can enter once (per entry type) every day. The contest for the Mediven Harmony armsleeve ends Friday, October 16th at midnight. The winner will be announced the following Monday. Don’t forget to check back next week for our next giveaway!