b'I was diagnosed with lymphedema when I was 14 years old.It affects the way I feel every day. It affects my mind and myoverall quality of life. Please help people like me.Erica Zervanos, Philadelphia, PASince I am now limited in my ability to travel, carry items, or eatsuffer with lymphedema and other chronic swelling conditionsout with them, that part of my work life is forever behind me. for which there is no current cure for. Day in and day out I I have a difficult time giving up. This is why I need to share experience patients being denied the care that they need due to my story with you! lack of a physician diagnosing accurately and a severe lack of insurance coverage for necessary treatment. We are also better understanding the genetic components of lymphedema, which ANA ALVARADO means there is a strong likelihood that my future children could Forth Worth, TX inherit this chronic disease. I encourage you to hear our criesand to prioritize funds that are extremely needed to facilitate In 2009 I was diagnosed with secondary lymphedema at age 21. research and education for a cure!I had a removal of a tumor in the right groin, chemotherapy, and radiation due to cancer diagnosis. Due to the tumor, my leg was swollen from the groin all the way down to my toes. The doctorJOY BARNETTwho performed my surgery said the swelling would go away after aKingwood, TXyear. A year went by and the swelling never went away and, in fact, it was only getting worse. I visited a doctor at MD Anderson whoWhen I was diagnosed with lipedema and secondary lymphedema, diagnosed me with lymphedema.or lipolymphedema, I was devastated. At the time I was 54 years Living with lymphedema is a day-to-day challenge. It has effectedold, but I had actually had this condition for years. Now it had a me physically and emotionally. I can not wear shorts, dresses, orname. And no cure. And would be progressive. For the rest of my skirts due to the swelling. There are days where I cant even cooklife. We are told to be thankful that it is manageable, and I am, but because the pain in my leg is overbearing. management is time-consuming and expensive. I would rather not go to a licensed lymphedema therapist every day for two months I am a mortgage processor and my job consists of sitting at a deskonce a year to be massaged and wrapped with bandages to wear all for eight hours. There are some days when I cant handle it. Imday and night to reduce swelling. I would rather not spend two afraid that one day I will have to quit my job. I do my best to carehours a day lying in bed using a pump to simulate manual massage.for myself, but sometimes its never enough. Due to the socialI would rather not to have to wear compression garments 23 hours distancing taking place I have been working from home for threea day. I would rather not have to worry about whether I can walk weeks now. This morning I woke up with swelling in my ankle,on any given day because my legs are too swollen and heavy.something that is not normal for me. I am afraid this willAll of the people suffering from lymphatic diseases ask for one become my new normal. thinga cure. Please help us.CAM AYALA ZACHARY BERGERHouston, TX Conroe, TXMy name is Cam Ayala, and I am a 31-year-old hereditaryI am a 16-year-old sophomore in Texas. The impact lymphatic lymphedema patient. I have been managing this chronic diseasemalformation has had on my life is dramatic, because it not only since I was 11 years old. I was born and raised in Houston, Texas,has impacted me, but my family as well. I was born with which has the largest medical center and some of the top physiciansmacrocystic and microcystic cysts in my neck, jaw, and tongue.in the world. It still took over a year for me to get the properI have had eight surgeries including a tongue reduction surgery diagnosis. Lymphedema is not a one-size-fits-all disease. Thoughwhere they cut seven millimeters out of the middle of my tongue many patients experience similar symptoms, each patient has hisand sewed the two sides back together. I also had some of the tip of or her own unique case which further validates the extrememy tongue removed. I continue to experience tongue swellings necessity for increased research to better understand this uniquerandomly. In fact, as I write this, I am swollen and in pain. There is disease that impacts over ten million Americans alone.no cure and it is hard not be very mad and frustrated that there Professionally, I am a compression therapy consultant for ais currently NO MONEY being put toward research for a cure for company that manufactures pneumatic compression pumps forlymphatic malformations. Lymphatic malformation also effects home therapy treatment. These are prescribed to patients whomy education, my social life, and my emotional state. AN AMERICAN TRAGEDY 39'