b'My world, my life, has become much smaller. The heaviness in myleg has become an overall emotional heaviness. A cureor even appropriate treatmentwould bring back joy, hope, and possibility. Please, please, take this condition seriously.Emilie Beck, Los Angeles, CAjob. Its a constant worry how my leg feels, how my leg looks, and with the same condition. This needs the full weight andpower how my leg will handle the day-to-day activities.that Congress can provide through funding more directed A cure for lymphedema would make me whole again. It wouldresearch for therapeutics, and cures for this condition.allow me to not plan my every move and just live my life.It would propel me to fulfill my career dreams and be a normalSARAH BRUNSKILL28-year-old female again. A cure for lymphedema would change my life forever. Pleasanton, CAImmediately after my son Grayson was born (August 2016), the JACQUELINE BROCK delivery pediatrician was concerned with the atypical full body swelling (later diagnosed as congenital lymphedema) and sent him Indio, CA to the NICU for observation. We were in the hospital for five days I was 40 years old, undiagnosed for 5 years, Stage 3 BC, 12-yearfor monitoring, running labs, tests, and genetic tests to try and survivor. I saved my own life because I believed the diagnosticsunderstand what was happening. No one could find a cause. were incorrect in my diagnosis. Five mammograms, 3 ultrasoundsWhich is where we still are today, in medical limbo and blind to all NORMAL, until an ultrasound completed by a Radiologist at myany complications that could come down the road. A parents request recorded the findings of cancer. I had a lumpectomy and worst nightmare.18 lymph nodes removed in surgery in 2008. I have suffered moreCurrently Graysons lymphedema is managed by custom daytime from the lymphedema and the cellulitis infections in my arm,and nighttime compression garments. These garments have to be than I ever did from chemotherapy.specially made for him in different parts of the world as there are I am only 52, and it has been a blessing to be alive and see all theno off-shelf garments for children. Additionally, these garments miracles and milestones with my beautiful family. However, theneed to be replaced every 34 months to accommodate his rapid physical setbacks, fevers, infections and value of life has beentypical growth that is typical for young children. This has led to a severely challenging for the entire 12 years. Only four of 18 lymphhuge financial burden on our family as one full set of daytime nodes were positive for cancer. Yet the other 14 healthy lymphgarments can cost up to $4000 and a nighttime set up to $5000. nodes were surgically removed because my surgeon knew best.To date, insurance fights us every step of the way and, at times, This is my journey!denies these medically necessary treatments.KENNETH BRUNSKILL JUDY BURROWSFremont, CA Huntington Beach, CAMy late nephews oldest daughter (my grand niece) has a son I developed lymphedema shortly after removal of all the(my great grand nephew) who was born with and has acuteinguinal lymph nodes in my left leg due to metastatic melanoma.lymphedema. I am the youngest and only living son of the BrunskillIm thrilled to be a nearly 20 year survivor of the cancer, but (paternal) side of the family, making me the family patriarch. Tolymphedema is a burden and constant reminder of the disease.my knowledge there is not any family history oflymphedema or My left foot, leg and abdomen are about 20% larger than myany form of it, on either my fathers or mothers side of the family.right. It has impacted my appearance, self image, health,This condition has us all very concerned, particularly amid thismarriage and many of the athletic activities I used to enjoy.Covid-19 pandemic. Our great grand nephew is 3+ now, and anGetting approval for massage therapy, compression garments,active young man with a wonderful happy life. He is so veryand a compression device is a frequent challenge. Even though fortunate to have such wonderful caring parents, and a Nursethere have been surgical solutions for several years, my Practitioner grandmother.insurance continues to consider it experimental. Even with diligent care, I have suffered cellulitis. However given all the loving and professional care he has, it palesPeople who suffer this disfiguring and life shortening disease in comparison of what could be done for him and the may othersdeserve more dollars to go to research for a cure.AN AMERICAN TRAGEDY 6'