It goes to further describe: "Lymphedema is swelling in one or more extremities that results from impaired flow of the lymphatic system.
The lymphatic system is a network of specialized vessels (lymph vessels) throughout the body whose purpose is to collect excess lymph fluid with proteins, lipids, and waste products from the tissues. This fluid is then carried to the lymph nodes, which filter waste products and contain infection-fighting cells called lymphocytes. The excess fluid in the lymph vessels is eventually returned to the bloodstream. When the lymph vessels are blocked or unable to carry lymph fluid away from the tissues, localized swelling (lymphedema) is the result.
Lymphedema most often affects a single arm or leg, but in uncommon situations both limbs are affected.
Primary lymphedema is the result of an anatomical abnormality of the lymph vessels and is a rare, inherited condition.
Secondary lymphedema results from an identifiable damage to or obstruction of normally-functioning lymph vessels and nodes.
Worldwide, lymphedema is most commonly caused by filariasis (a parasite infection), but in the U.S., lymphedema most commonly occurs in women who have had breast cancer surgery, particularly when followed by radiation treatment.
It has been estimated that worldwide, there are 140 to 250 million people affected by lymphedema."
This definition is good for basic knowledge, but isn't true in a lot of cases. For example, my lymphedema was caused 10 years ago when my knees hit the steering wheel in an auto accident. It can be quite dibilitating overall and discouraging as there is no known cure for lymphedema.
Tiffany Howe, though will be coming forward today to share with us her story, which she brieflly describes as:
"My name is Tiffany Howe and I was born with Primary Congenital Lymphedema (Milroy’s Disease). After 27 years of struggling with this ailment, I was given a choice of losing my left leg or undergoing the Charles Debulking procedure. The choice was difficult and very challenging to make. I chose the Charles Debulking procedure and could not have guessed the life-changing experiences which would result. Full recovery took a year and included me learning to walk again.
For the next five years, I used my training as a Registered Nurse to research and study any available information about my disease – general knowledge, management, and care of Lymphedema patients. Research ultimately led me to the conclusion that Lymphedema patients are in need of support for this currently incurable disease. Support includes education and advocacy. I represent Virginia as part of the Lymphedema Advocacy Group, which is a patient-centered group, raising awareness. Our mission is to get passage in Congress for the Lymphedema Treatment Act.
Lymphedema has caused many trials and tribulations in my life. However, I now understand that regardless of my condition or situation, my life is still beautiful ! One thing that motivates me is knowing that my testimony can help someone else triumph. Despite the negativity, depression, worries, tears, loneliness, and fears, I believe that I can keep moving in the right direction with the help of my family and friends near and far. Deborah Martin, who is a MLD therapist and my friend, has spent countless hours helping me maintain the health of my leg and by encouraging me to keep moving, not giving up on finding good care and compression garments. Cindy Anderson has assisted me in finding a garment which fits my leg shape which has resulted from the debulking procedure. My quality of life has improved so much by having a well-fitting garment which fits inside my custom shoes. As a result of having well-fitted garments, I am able to take my daughter to football games and see her cheerleading and take her to ballet practice every week. These are things that I couldn't do before! Gone are the days of slipping compression garments or bandages too bulky to fit in my shoes. I am Tiffany and I Keep Moving toward a better life!"
I hope that you will join us today as we discuss her story, as well as her advocacy journey with the Bill currently in legislation to help make a difference for all lymphedema patients.
To join our show today (10a CST/11a EST), simply click on this link: http://www.blogtalkradio.com/oralhistory/2014/03/18/meet-tiffany-howe--lymphedema-warrior-advocate. You may also click on that same link at any point in time after the show, as all shows are recorded and archived for listening by others on an ongoing basis. During the show, we will also have the live chat open for you to ask any questions at any point in time during the show as you are listening to it. Feel free to share this widely with anyone you know that is affected by Lymphedema and/or your legislators so that they too can hear the importance of this Bill being passed.
I am hoping that you, too, see how she demonstrates that strength and perseverence she has had throughout these years, while forging ahead; an example of a warrior that we can all learn from, no matter our challenges that lay before us. What are your thoughts? Do you have a warrior in you, working towards to a newer you?