Taking Your Voice to Congress

"You have a lot of well-meaning people in [Congress] but what moves this institution is the external pressure on it. You are the external pressure and you put a human face on it." —Rep. Rosa DeLauro's (CT) response to LE&RN Spokesperson Kathy Bates' live testimony on Capital Hill
 
Join this effort to move the lymphatic agenda forward in Congress. All United States residents, whether those living with a lymphatic disease or those who care about them can join this effort. In 200 words or less, tell Congress what impact lymphatic disease (lymphedema, lipedema, lymphatic malformations, etc.) has had on your life and what a cure would mean to you.

  • DeAnna Wilson

    My daughter, Amanda got lymphedema in both legs, from a cut that the emergency... Read More
  • Kathy Sedan

    My lymphedema began in Feb 1971 with swelling in my left foot. It took many years,... Read More
  • Marjorie Yesley

    Living and coping with lymphedema for the past 15 years has been an experience... Read More
  • Ann Ross

    I accidentally fell while I was skiing, tore a leg muscle and got lymphedema from... Read More
  • Jennifer Rodriguez

    I developed lymphedema as a result of having my lymph nodes removed after a... Read More
  • Amanda Berg

    16 years ago this month, I was bitten by a brown recluse in the computer lab on my... Read More
  • Sharon Sweetman

    I had four back surgeries in 2016. The Lymphedema came on slowly. I am now unable... Read More
  • Jacqueline Brock

    I was 40 yrs old, undiagnosed for 5 yrs, Stage 3 BC 12 year Survivor. I saved my... Read More
  • Karen Griffin

    I am not from one of the states on the list but would like to submit my story. I... Read More
  • Esteban Delgado

    I have advanced Lymphedema (LE) that went undiagnosed and untreated for at least... Read More
  • Sarah McCollum

    I was 25 when my left leg lymphedema presented itself and changed my life forever.... Read More
  • Amy Fairweather

    I developed secondary lymphedema in my left leg 12 years after having 29 lymph... Read More
  • Paula Johnson

    I had breast Cancer surgery in August 2012. I was diagnosed with Lymphedema in... Read More
  • Bridget Benjamin

    When I had cancer surgery (uterine cancer), I had no warning that the removal of... Read More
  • Kari Formsma

    Finishing my surgery, radiation and chemotherapy for uterine cancer, I thought the... Read More
  • Kerri Rossi

    Drew, our second daughter turned 3 on March 9th. She was born with a swollen... Read More
  • Elizabeth Baker

    I'm not sure how I got lymphedema. It started at 13. Before that, I had... Read More
  • Gay Rester

    I’m 61, was diagnosed in 2014 with stage 3 inflammatory breast cancer, that... Read More
  • Nicholas Herenandez

    My name is Nicholas, I am nine years and I’ve had lymphedema all my life.... Read More
  • Katy Jones

    Surviving non-Hodgkin's lymphoma twice has come at a price. Chemo &... Read More
  • Emilie Beck

    I developed lymphedema in my right leg almost two years after surgery for ovarian... Read More
  • Jay Granzow

    Every person suffering from lymphedema or lipedema deserves the opportunity to... Read More
  • Sylvia Montero

    It all started when I was entering puberty. I noticed that my legs were developing... Read More
  • Nathan Dunn

    I’m 56 and was born with lymphatic problems. My LE showed up in my left leg... Read More
  • Elizabeth Vasquez

    I have tried endless dieting , even gastric sleeve . I have lost 70 lbs and yet my... Read More
  • Amanda Howard

    Although I do not have lymphedema, I have had lymph nodes removed which makes me... Read More
  • Carol Vojir

    It all began after age 70! It's bicycling related, more's the pity. After... Read More
  • Karin Siebold

    As a Lymphatic Drainage Therapist I regularly meet new clients who are dealing... Read More
  • Erica Zervanos

    I was diagnosed with lymphedema when I was fourteen years old. I came home from... Read More
  • Jennifer Foster

    My name is Jennifer Foster, I have lymphedema in both legs and feet. I was... Read More
  • Lisa Gainsley

    37 years ago, when I was 13, my mother died from lung & brain cancer. This... Read More
  • Kristin Hillenbrand

    Hi, my name is Kristin! When I was 24 years old I was diagnosed with stage 3... Read More
  • Christine Lieber

    Facing life and death uterine cancer was rough! But having to live with... Read More
  • Chris Harmer

    My wife was diagnosed with cancer in 2011. After surgery, chemo, and radiation and... Read More
  • Maria Hoover

    From very young I was told I was "meaty". Kids made fun of my big arms and I... Read More
  • Rhonda Brannagan

    I am submitting a story for my daughter, as she doesn't have computer. She has... Read More
  • Natalie Miceli

    Finally six months ago I got diagnosed with Primary Lymphadema after getting... Read More
  • Juan Reyes

    Lymphedema is a serious chronic disease that plagues nearly 10 million Americans... Read More
  • Nancy Errante

    My daughter was diagnosed with primary lymphedema at age 11. Her doctors said... Read More
  • Marianne DeAngelo

    My daughter was diagnosed with lymphedema at the age of 28 and sought treatment at... Read More
  • Ronald Afdal

    My 4 year old great grandson has experienced lymphedema since birth causing... Read More
  • Kellie Howard

    One of the greatest and scariest days of our lives was August 16,2016. The day my... Read More
  • Cindy McDonald

    I thought lymphedema was a disease for unfortunate Africans bitten by mosquitos,... Read More
  • Cecilia Mund

    I was diagnosed with lower extremity lymphedema after treatment for cancer when I... Read More
  • Beth Doran

    I have limphedima myself for the last 5 years after being diagnosed there was very... Read More
  • Melinda Cunningham

    I was misdiagnosed for 7 years. I finally found a vein specialist that immediately... Read More
  • Amanda Hadaway

    I was diagnosed with lipedema in May 2019, I also have lymphedema, so I actually... Read More
  • Katie Bolsinger

    When I was 50 my legs started filling with fluid. I was sent to several specialist... Read More
  • Deborah Clark

    All of my now chronic pain issues were non -existent prior to the Hysterectomy I... Read More
  • Cheryl Scoledge

    I've had Lipedema at least since puberty, but was only Diagnosed when I turned... Read More
  • Patricia Cornute

    I was diagnosed in 2007 with primary Lipedema, and because it took so long to get... Read More
  • Helene Roberts-Kephart

    My dear friend was diagnosed with lymphedema shortly after battling cervical... Read More
  • Kathie Woodman

    My nephew was born with Lymphedema almost 4 years ago. He is an amazing kid and so... Read More
  • Stacy Vottto

    I have watched my sister suffer with Lymphedema for much of her life. When she was... Read More
  • Leah Moriarty

    I met my best friend when we were six years old. About five years later, she was... Read More
  • Ann Carollo

    My niece was diagnosed at age 11. She didn't receive helpful medical care... Read More
  • Susan Tognolini

    Our great nephew Grayson was unexpectedly born with lymphedema three years ago. As... Read More
  • Kathleen Lisson

    It is frustrating to me as a Lymphedema therapist that this curable disease is so... Read More
  • Michael Prokopowicz

    My name is Michael P. and I am 10 years old. At the age of 6 years old, I was... Read More
  • Nicole Aweti

    I was diagnosed with primary lymphedema at age 11. My doctors said there was no... Read More
  • Katie Dunphy

    My friend's son was born with lymphedema and over the past few years I've... Read More
  • Amber Kelly

    My cousin's son, Grayson, was born with lymphedema. He is one of the sweetest... Read More
  • Kacey Woodman

    When my baby cousin was born in August 2016, his birth was met with lots of joy... Read More
  • Judy Burrows

    I developed lymphedema shortly after removal of all the inguinal lymph nodes in my... Read More
  • Chrissy Lowe

    I personally know and love a child affected by lymphedema and have seen the stress... Read More
  • Barbara Harmer

    I am a cervical cancer survivor of 8 years. Shortly after surgery and treatment I... Read More
  • Kathleen Grubbs

    I was diagnosed with Lymphedema after my 6th (ish) bout of cellulitis. I woke on... Read More
  • Kenneth Brunskill

    My late nephew's oldest daughter (my Grand Niece) has a son (My Great Grand... Read More
  • Allyssa Sepulveda

    My experience with lymphedema is watching a sweet little boy conquer the obstacles... Read More
  • Becca Sajbel

    My name is Becca. I am 26 years old and have primary lymphedema in both arms and... Read More
  • Emily Goff

    I have struggled with leg pain since I was a little girl. My parents took me to... Read More
  • Angela Marquez

    I have secondary lymphedema in my legs due to cervical cancer treatment in 2007. I... Read More
  • Laura Oden

    I have struggled with lymphedema my whole adult life. Like many others, surgery... Read More
  • Maureen Noftsinger

    When I was 39 years old I was in the best shape of my life. I was an active,... Read More
  • Cynthia Mairose

    My experience with lymphadema began in 2016, seven months after my surgery for... Read More
  • Paula Kancianic

    I am a 61 y/o RN who underwent chemo, surgery, and radiation in 2016 for breast... Read More
  • Sarah Brunskill

    Immediately after Grayson was born (August 2016), the delivery pediatrician was... Read More
  • Ana Alvarado

    My name is Ana Alvarado. I was diagnosed in 2009 at age 21 with secondary... Read More
  • Jackie Barnett

    I’m 49 years old, a breast cancer survivor and I have lymphedema in my arm,... Read More
  • Dr. Sheri Prentiss

    I was a successful practicing physician, overseeing the Occupational Medicine and... Read More
  • Andrea Abernathy-Briggs

    My name is Andrea Abernathy Briggs of Memphis, Tn and I obtained my lymphedema... Read More
  • Mary C Rose-Walker

    I was finally diagnosed in 2015, after dealing with the effects of primary... Read More
  • Shelley Denyer

    2000 I went into the hospital for a regular total abdominal hysterectomy with... Read More
  • Lindsay Bennett

    My name is Lindsay Bennett, and I am 28-year-old female who loves sports and being... Read More
  • LaShonn Edmunds

    My name is LaShonn and I’m a resident of Greenville South Carolina. I... Read More
  • Colleen Audette

    After having a lymph node removed due to a melanoma on my arm, I got the ok from... Read More
  • Cam Ayala

    My name is Cam Ayala, and I am a 31-year-old hereditary lymphedema patient. I have... Read More
  • Karen Waring

    I am 78 years old living on a fixed income! I've had lymphedema for years and... Read More
  • Rosina Probasco

    I have secondary Lymphedema from Synovial Sarcoma Cancer, at the age of 17. They... Read More
  • Rosanne Bessenaire

    I am Co-owner of Space Coast Lymphedema clinic in Melbourne FL. Lymphedema is... Read More
  • Barbara Lambert

    I am a teacher, mother, grandmother, wife, and breast cancer survivor. Now adding... Read More
  • Leslie Zachary

    I was diagnosed with endometrial cancer at age 57 in May 2013. I had a complete... Read More
  • Terry Moore

    I have had symptoms of Lymphedema in both legs for over 40 years, but was only... Read More
  • Emily Smith

    Back in 2015 and after a year of being dismissed of my symptoms by my Gynecologist... Read More
  • Hattie Johnson

    2016 l developed a lump on my thigh, at first I thought it was just a pimple.... Read More
  • Carol Fuller

    In 2016 I was diagnosed with breast cancer. I had chemo, double mastectomy surgery... Read More
  • Diane Russell

    In 2013, age 46, a partial hysterectomy, because of a fibroid, revealed an early... Read More
  • Kathryn Burke

    I am grateful, beyond measure, to be approaching five years past the end of my... Read More
  • Amanda Root

    I have secondary lymphedema from cervical cancer. I have struggled with... Read More
  • Lilliana Munoz

    I am 23 years old and have primary Lymphedema on my entire left side only. Since I... Read More
  • Heather MacLaughlin Garbes

    As an active and athletic person, I had noticed a few times that my feet were... Read More
  • Emma Detlefsen

    My name is Emma, I’m 11 and I was born with primary lymphedema in my legs... Read More
  • Mary Pargas

    In 2008, at age 51, I was diagnosed with uterine cancer. I had a total... Read More
  • Veronica Seneriz

    I was born with a form of genetic Lymphedema called Lymphedema–distichiasis... Read More
  • Tiffany Detlefsen

    Lymphedema is the bane of my existence. In 2008, my daughter was born seemingly... Read More
  • Izzy Snyder

    Lymphedema causes me some amount of pain most days and limits the amount of time I... Read More
  • Lisa Venuto

    Hi, I am 54 years old and have stage 3 Lipedema with secondary Lymphedema. I was... Read More
  • Julie Smith

    After getting through a mastectomy, chemo, radiation, blood clots from the chemo... Read More
  • Danielle Bell

    18 yrs ago I had my first child. I spent the next nearly 10 years fighting... Read More
  • Dana Huck

    Diagnosed in 2018 at age 34 after a single lymph node removed for a melanoma... Read More
  • Tessa Warnick

    I was 18 yrs & got a DVT (2000) in my leg after 3 wks of being on b.c. pills... Read More
  • Bridget Forster

    I was born with primary lymphedema in both hands and arms and went 12 years... Read More
  • Pat Grainger

    Two of the most thrilling moments in my life were the birth of my daughter &... Read More
  • Theloise Ferrell

    I had breast cancer and a mastectomy when I was 33 years old. Fifteen years later,... Read More
  • Annalea Gray

    I’m 41yrs old and started showing symptoms of lymphedema at age 15. I went... Read More
  • Alberta Richetelle

    I am 80 years old. Had polio when I was 10 which paralyzed both my legs. Have used... Read More
  • Irene Westwood

    I was 35 years old, had two small kids and had just started working as a teatcher... Read More
  • Lydia Dempsey

    i woke up one day at age 33 when my life flipped around. i was diagnosed with this... Read More
  • Sue DeCoite

    Surviving breast cancer, mastectomy with reconstruction and radiation treatments,... Read More
  • Mary Kay Radnich

    The first thing I noticed, as a teenager, was that my hips were bigger than normal... Read More
  • Diana Schumacher

    I was an eight month baby and lived with constipation my entire life. Nine years... Read More
  • Ps Ramon Dorta

    Greetings, My name is Pastor Ramon Dorta, In 2009 I traveled to Peru and... Read More
  • Kimberly Byle

    I've had secondary lymphedema for over half of my life. But since I only had a... Read More
  • Hana-Bashe Himelstein

    Shoes. What really sets me apart from other women - normal women - is my shoes.... Read More
  • Beth Meyer

    In 2013, our family’s life changed dramatically. My 9 year-old daughter... Read More
  • Donna Faber

    At age 55 I got lymphedema of my left leg, came on just suddenly. I have had this... Read More
  • Mary Kay Radnich

    When I went through puberty, I became "hippy" and had legs that were different... Read More
  • Clare Chollet

    A little bump on my ear led to metastatic squamous cell skin cancer and resulting... Read More
  • Clare Chollet

    A little bump on my ear led to metastatic squamous cell skin cancer and resulting... Read More
  • Emily Davis

    I am a 40 yo female and have congenital Lymphedema of the left leg. After my... Read More
  • Rachel Whiting

    My son Lane was born in 2006 with a diagnosis of fetal hydrops, which is fluid... Read More
  • Valeria Vincent Sancisi

    It will be two years in July 2020 that I have lived with Lymphedema. 6 weeks after... Read More
  • Debra Baxter

    I was diagnosed with Breast Cancer in Sept 2016. I had a right mastectomy and... Read More
  • Kathleen Mulligan

    I’m Kathleen Mulligan. I developed Lymphedema in 2015 from treatments for... Read More
  • Ruth Ann Cleveland

    I was born with lymphedema (Milroy's Disease) in both legs and feet as were my... Read More
  • Suzanne Phelps

    I had uterine cancer, and following a total hysterectomy, radiation, chemo, and... Read More
  • Mindy Bowen

    I am a Lymphedema Nurse Specialist. I have seen this disease disable and destroy... Read More
  • Kathy Phillips

    I have neck lymphedema secondary to throat cancer diagnosed 2019. What a shock it... Read More
  • Dorothy Byers

    I'm a human being that was born with primary lymphedema second to Turner's... Read More
  • Carey Haws Fox

    I am a breast cancer survivor and I live with Lymphedema every day since my breast... Read More
  • Sheila Jarvis

    I was diagnosed with lymphedema at 49 over 20 years ago. I was very active before... Read More
  • DeAnna Wilson

    Our daughter in Arizona has this horrible disease in both legs! A younger vibrant... Read More
  • Yvonne Stoops

    When I was 12 years old, one of my ankles was swollen. Fortunately for me, after... Read More
  • Catherine Holley

    In 1988 I was a nurse in a large, Harvard-affiliated, Boston hospital. A physician... Read More
  • Zachary Berger

    I am a 16-year-old sophomore in Texas. The impact lymphatic malformation has had... Read More
  • Marie Apodaca

    My journey started around puberty with lymphatic diseases. I went misdiagnosed for... Read More
  • Kelly Bell

    Lymphedema cost me my career of 25 years in the Coast Guard. My lymphatic system... Read More
  • Jennifer & Connor Looby

    Connor was diagnosed with a rare lymphatic disorder at 6 weeks old. We were told... Read More

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