It's great having a foundation like this spreading not only awareness but providing assistance to people like myself. I went many years without any knowledge about my condition just a general awareness to complications related to it. Finally I met someone who could help me after I was in very bad shape. My sincere hope is an organization like Ninjas can help someone else find out sooner, and get help they need.
Amy Rivera is very friendly. Shebends over backwards to do whatever she can help those in need of lymphedema supplies.
I can not express my love and feelings for this organization I am a senior with limited income and with the unfortunate issues of this disease not being an payable item for Medicare it has been impossible to get the needed items to maintain the disease of lymphedema. If they did not help me I would be unable to buy the custom compression hose or the pump, I thank Amy for her ability to help others with such compassion,
I struggle with primary lymphedema in my lower legs and at one point was struggling financially to the point that I was unable to afford replacement compression wraps and stockings. Amy at Ninjas Fighting Lymphedema, worked closely with me to make sure that I received the compression equipment that I needed as quickly as possible. My legs and body were able to get the care they needed and that also helped my mental health. I am so thankful for Amy and NFLF.
As a widow and breast cancer survivor, the "Ninjas Fighting Lymphedema," has been a blessing to me. With their benevolence and loving support, I can maintain my dignity and feel that my life still matters. I am grateful for the vision and compassion of Amy Rivera who is making a "life-giving"difference!
My name is Chandra and I’m a single mother of four. I have secondary Lymphedema in my left leg. I have suffered with this condition for over 10 years getting misdiagnosed by doctors and under treated. My leg began to deform in shape and my lobe was so swollen it covered my feet and was extremely pain to touch, unbearable to stand or walk. It was also painful to watch. I inboxed Amy and a hearing my story and seeing my Leg Amy and her organization got me the medical help I needed. They got me proper compressions. Talk to me and cared for me. See I hated myself. So many people walk out my life and the ninjas walk in with Love and Hope. They truly cared for me and my leg. And today my leg is no longer Deformed, it doesn’t hurt nearly as much, and my mental state is so much Healthier. They gave me my Life back and the sincerity is True.
I'm so grateful for Fighting Ninjas Foundation. I had lymphedema since 2001, but hadn't had treatment because I couldn't afford the sleeves. I finally was able to get the therapy. The therapist contacted Amy Rivera about getting the sleeves. It only took a few weeks and I had the sleeve, and everything I needed to treat lymphedema. Amy made sure I had the correct size. The swelling has gone down alot. Thank you so very much.
I was misdiagnosed for 10 years. When finally diagnosed my lymphedema was out of control. So therapy and wraps started but only a bandage you would put on your wrist or ankle. When I priced the wraps that are properly used for lymphedema they were price and insurance would not pay for them due to them not deemed a necessary article. So I had seen where Amy Rivera had fought with it most of her life and started a non-profit to assist with all aspects of lymphedema from Doctors to helping purchase wraps. She and NFLF is a god sent and without them, I would still be struggling. It is frustrating not knowing where to go or what to do but Amy made me feel like I wasn't just a handout or feeling worthless. She was discrete, she understood and was passionate. I have since spread via social media, word of mouth whatever I could to pass on the work she does to help others like me. My lymphedema because of the wraps is starting to become more controlled and I am starting to look like a normal human and essentially giving me my like back because of NFLF.
Thanking Amy and Ninja's Fighting Lymphedema Foundation doesn't feel like enough.
I needed a new compression sleeve after having mine for over a year and it was falling apart at the seams. Without a sleeve that fits properly it is impossible to live an active lifestyle much less do daily tasks as simple as washing dishes.
Ninjas Fighting Lymphedema stepped up and quickly purchased a sleeve for me. I am so thankful for their generosity and kindness. I would still be in my old ratted sleeve because I just don't have the money for a sleeve in my budget. They are an amazing organization that raises awareness and steps up to the plate for people who need help living their best life fighting something that can be so draining. I appreciate them so very much. And thank them from the bottom of my heart!
This organization helped me getting help with my compression garments to aid me with my lymphedema; when nobody else would help me.
Amy:
I want to thank you and all the wonderful Ninjas for my new compression sleeve and gauntlet. YOU ROCK!!!!!! You are an amazing organization that is fighting to help others, and I deeply appreciate all the work you do.
Throughout my breast cancer recovery, I have been very involved with Cancer Exercise Programs: specifically - Yoga, Pilates, and Strength and Conditioning classes, and I know how important regular exercise is in my continued healing and wellbeing. With this sleeve and gauntlet, you have just helped me continue with this program, and with my ongoing recovery, as you will see below.
Exercise helps minimize and manage lymphedema in a few special ways: Muscle movements provide the pumping action to lymph through the lymphatic system, and deep breathing stimulates lymph flow. Strong muscles help protect against a lymphatic response when a limb or torso must support unaccustomed weight, which the body interprets as a stress event. These are compelling reasons for breast cancer survivors to exercise and lift weights, but improper exercise and strength training techniques can also create lymphedema risk. Breast Cancer Related Lymphedema (BCRL) patients like me should always wear a well-fitting compression sleeve and gauntlet while lifting weights, doing Yoga or Pilates. Exercise raises body temperature, stimulating lymph flow, and the very process of strength training—progressive resistance—loads the arm with unaccustomed weight that can trigger a lymphatic stress response. Yoga and Pilates movements that require the arm to support body weight can have the same effect.
My breast cancer related lymphedema currently is ‘managed’ - thanks to the physical therapy, constant attention, exercise and self-care I undertake. While my swelling is under control, I still experience the pain, heaviness, numbness and tingling. My range of movement is significantly better but will never be ‘back to normal.’
I must always wear a sleeve/ gauntlet when doing any form of exercise. Medi-Cal does not cover the cost of my compression garments. Without the financial resources to replace my garments as often as required, I have been putting myself at increased risk of medical complications and additional medical costs.
The irony of this situation is not lost on me:
• Situation: Many Breast Cancer Related Lymphedema (BCRL) patients like me are prescribed exercise, both during initial intensive treatment and for life-long maintenance. (In my opinion, the ones who have not been recommended or prescribed exercise should be asking questions of their doctors). I must wear a sleeve/gauntlet while doing exercise.
• State of Affairs: Medicare, and consequently many other insurance policies, don’t cover the medically necessary, doctor-prescribed compression supplies used daily in lymphedema treatment. My Medi-Cal doesn’t cover the cost of compression garments. I cannot afford the out-of-pocket cost to purchase/replace new compression garments as often as required.
• Result: For many, exercise is just not done, or is done at increased medical risk, without compression garments or with old/ill-fitting ones. Many patients essentially are not able to do crucial exercises that help to minimize and manage lymphedema.
• Consequence: if people with lymphedema can’t afford to pay out of pocket for these vital supplies, the likely result is an increase in total healthcare costs associated with this disease by increasing the incidence of complications, co-morbidities and disabilities resulting from this medical condition.
Going through cancer is life altering. The financial aspects are even worse. To know that proper therapy and compression garments can help someone with their quality of life is extraordinary. To not be able to afford what is needed is criminal. To know that I might actually be putting myself at risk because insurance does not cover my compression sleeve/gauntlet is downright scary as hell.
My gratitude for the assistance of Ninjas Fighting Lymphedema is overwhelming! You are an amazing organization that is fighting to help others, and I deeply appreciate all the work you do.
I saw Amy Rivera's video on YouTube. I researched and found her foundation's website. I made a call and was told Amy would personally call me back. Living in Canada, I was doubtful. Well, a week later - Amy called and is personally helping me. A reduction kit has been ordered by her foundation.
After 7 years of no hope, not only is there hope...but possibly a recovery!
An amazing organization that has paid for compression stockings that would have been difficult for me to afford. I'm very grateful.
This is an incredible foundation with a great purpose. The founder has a huge heart for the patients affected by Lymphedema, and understands first hand what the patient struggles can be like. This is a wonderful foundation to work with, and is providing hope to many!!
The organization focuses on needs and support to those in need in an arena that needs more education and advocates. The second costliest ailment to Americans and those around the world. The Ninjas Fighting with Amy Rivera are on the right path, to a cure!
I am so grateful for the ninjas fighting lymphedema group and amy. Amy goes above and beyond to help those of us struggling with this disease. She is always willing to explain her struggles that she has endured with this as well as provide people like myself who had no where to turn to look for the answers i needed reguarding this disease. Amy has always been willing to provide me with the resources i have needed for my lymphedema. She is a blessing to us all. Amy does not claim to be a physician so please do not assume she does. Thank you ninja for doing all you do for us fellow lymphies. You rock.