Thanks so much Kathy. Have Primary Lymphedema which revealed itself at age 15 and now I have had it for 42 years. I used to dance, cheerlead and play piano, and I stopped these activities because I was so depressed to find myself with this awful swelling in my leg that no one else my age had. I couldn’t go to the beach in a bathing suit. I couldn’t wear regular clothes. People stared at me. Always felt like an outcast because no one else could feel what I was feeling. All my dreams were dashed. It was like having a ball and chain on my ankle for the rest of my life. That is how I imagined myself at 15. The feeling of being disfigured as a teenager, while others are oblivious to the impact, is so powerful it can affect one’s outlook on life forever creating bitterness and sadness. Mental health therapy probably could have helped if anyone had thought of it. No one had. I Had to go to Mayo Clinic to find out what it was. You expressed so well what I felt. Appreciate all you are doing!

I was just diagnosed this month and I’m scared, fearful of my future and feeling alone. Thank you for your support and help.

I have recurring cellulitis in my lower left leg because of lymphedema. While having home care nurses coming to me to do the bandage changes, I was told to go into my family doctors' office to get checked out. The GP clinic I went to at the time was in the local hospital, a teaching hospital. The GPS were mostly lovely young ladies just out of school, at clinic learning to be GPs under the guidance of more experienced doctors. I hobbled into the office and met the nice young doctor, who was extremely excited to see me. I wondered why, as the leg she would have to deal with was quite revolting. A more experienced wound care specialist was there as well, another sweet young thing. I felt old and grim. The specialist carefully cut away the thick bandaging and almost cried. The GP stared, then scrambled to find a text book. The specialist told me that my leg and foot looked like I had been in a fire. She worried that I would lose toes. The GP asked if she could invite some other doctors in. I suddenly realized that my GP and the other new doctors that came in had never seen cellulitis before. They were double checking the books they brought with them. This was old hat to me, but it was new and exciting to them. Doctors aren't told about the perils of lymphedema or cellulitis. This is bad. The wound specialist was rebandaging my horrible mess of a leg and foot, firmly telling the surrounding doctors that I needed more antibiotics to go along with the pills I was already taking, or I would lose toes. The girls suddenly remembered that they were doctors and scurried off, while my GP proscribed more pills. For a brief moment my leg was a rock star. I got to keep my toes.

Manual lymphatic drainage works. I just became certified in it. I am a 22 yr. massage therapist and now I can treat lymphedema.

I've always like Kathy Bates.

I had melanoma in the lymph nodes in my left groin. Most of those nodes were removed in 1997. I was given to instruction on how to care for my leg after the surgery. I was told that the melanoma was systemic and that five years would be a long life expectancy for me. Nothing, the surgeon who had removed my nodes told me nothing about how to care for my leg that had no system to remove lymphatic fluid. My leg got huge. I finally found a massage therapist 100 mile away who did Vodder Technique. It was a long journey but she was able to help me get the swelling in my leg close to normal. I still struggle with the swelling everyday. It would have been so wonderful to know this information 21years ago before my leg got huge. I survived the cancer, the leg is an everyday reminder that I am still alive. Thank you Kathy Bates for helping make the medical profession aware of what happens after the surgery.

You are my hero, Kathy Bates. Your call to action for GPs to act as a first line of defense is spot on. All surgeons should be alerted as they can unknowingly damage the lymphatics. I am a physical therapist. 20 years ago, there was next to no curriculum on the lymphatic system, let alone lymphatic diseases. Nothing has changed. We should spend as much time on lymphatics as we do on the blood circulatory system. As you know the two go hand in hand. Without lymphatic vessels and nodes to reabsorb the blood plasma that normally enters our tissues, we would die. Without the immune cells of the lymphatic system, we would be unable to fight off bacteria, viruses, or fungus. Life is not possible with the lymphatic system. An untreated poorly functioning lymphatic system equals a life of struggle. Thank you for being the voice for many who suffer from lymphatic disease. I will pass on the message.

I am a LMT in Texas Certified in 2013 to perform Lymphatic Drainage. It's a great tool and I would recommend all Therapist and schools place this training in the beginning stage of our training.

Thank you, Ms. Bates for your eloquence, and commitment to this issue. An extremely common, but little understood medical challenge. Recently, hubby Ric has been diagnosed. I am a dedicated, hands on partner in his treatment. I work with our NYC-VA Hospital techie, read everything I can find....and learned how to help him use the Flexitone device, focusing always - on the wellness objective...on 'non-device days' we use special massage techniques. It's doubly helpful of course, when a spouse/partner/family member is on board. I can't speak for anyone else but, our contented, companionate marriage has grown deeper and closer - with my getting and, staying involved in my husband's LE battle....

Turn off the music. Her information is too important to have this distraction.

Thank you Kathy. I am 68yo and a retired RN. I have struggled with painful legs since I was a very young nurse. I have always been normal weight with "unremarkable" looking legs. Meaning the edema was so subtle no doctor ever took me seriously about the pain until one year ago. I saw a new female internist who listened to my story and referred me to a vascular surgeon. Varicose veins were diagnosed and treated over several months (7 procedures). The relief lasted 3 weeks. The edema and pain returned. So I was then referred to a lymphedema clinic and was taught the management of my disease. I was a highly motivated patient because the symptoms had become debilitating on most days. I was given (CDT), taught manual self massage and skin care , given a sequential pump for home, measured for compression stockings, etc. Medicare pays for much of the treatment, however they do not pay for the compression garments. That is another thing we need to address. I am able to wear an "off the rack" garment but custom garments are very expensive. Please keep us posted on your progress and needs for shining the light on this disease.

i am 30 years old..on the 5th after multiple tests I should hopefully know if i have this or not..Im pretty scared it could be so many things idk. its nice to not feel so alone. I never knew kathy bates had this. I just love her to death a true hero in my eyes at least to me. thanks for sharing. I'm just trying to educate myself on so many things and this is something my dr talked with me about.

Thank you Kathy for all you do !!

There are much better compression wraps on the britelife website. They don't dig into your ankles like stockings. Also have found furoshiki wrap shoes for swelling that no shoes would fit. I hav rashes anytime it's hot so I use colloidal silver to soothe & stop the itch. Also nutritional oils. Don't wear any waistband or bra to keep that "blisters" effect down. Fortunately I am retired now & gardening is my passion so watering my feet along with the flowers & veggies is therapeutic. I swim twice a week at the pool & use the sauna once a week to eliminate toxins. I have to use wraps on my toes which are measured & ordered by Martin Medical in Bellevue WA. The ankle piece is seperate from the leg piece. My daughter lives with me & puts them on every day. Before I discovered I inherited primary lymphedema, I was in the hospital 8+ times with cellulitis. I keep cephalexin on hand because if I catch it fast enough, I won't end up waiting nearly dead waiting for doctors to treat me.

Thank you, Kathy. I’m a fourteen year Breast Cancer survivor, haunted by an agonizing case of Lymphedema. Doctors aren’t concerned about Lymphedema..... Nothing really works....

Love this-suffer so much from this after my last knee replacement. Some doctors can care less and I told them off and I have found some very caring doctors. I have been through this many times over the years as I was a Shriner's baby. I know I am not the only one. I have a lot of doctors tell me sarcastically or jokingly that I look just like you. My name is Marla, and that doesn't help -or does in a political arena we have had for years. People stare, they whisper I am a junkie and when I look back and glare they turn sweet. I am very friendly, but once you play with my emotions then that's where I get bullheaded. I always enjoyed your movies and shows over the years, and I just turned 58. God Bless you Ms. Bates, and all that give me inspiration to keep going. One last thing, I was terrified of you in Misery, and was rooting for Mr. Caan.

Thank you, Kathy, for your courage and sharing your own pain and suffering. We also share same birthday! Your amazing!

Thankyou for being our voice! From a double mastectomy and upper lymphedema patient--me

Amazing data

I don’t understand the lack of communication between surgeons and lymphedema therapists on the proper type and fitting of the garment to be used immediately following surgery that impacts the lymphatic system. A front clasping sports bra was not the correct thing to wear following breast lumpectomy with the removal of 4 sentinel and 3 non sentinel lobes that were thankfully negative. Three weeks after surgery the swollen underarm and back pain were terrible. There is a gap in this process for cancer treatment in my opinion. One that would help with this issue.

Thank you LE&RN for putting this on the table. I too have Lymphedema in my right leg whereby the lymph nodes were removed following surgery for cancer of the uterus back in 2002. Although thankful not to die from Cancer, I was never told what to expect afterwards, and frankly the disease has been downplayed as a low level incident. Yet I have been struggling with the adverse effects of Lymphedema ever since, notably my right leg is much bigger than my left leg, and the pains of finding suitable clothing, etc, and the ongoing swelling throughout the day that becomes unbearable. Also the shape of my right leg has severely deteriorated. By the force of trying many different solutions, cutting salt & etc. blah, blah, blah, I have found a pair of socks that help keep the shape more human like but they are extremely uncomfortable in hot weather. I recently discovered this association and would like to thank the doctors and those involved, and thank Kathy Bates for agreeing to be the spokesperson for this all too important and misunderstood disease. I am following you from now on. 💕

Thanks you!!! I can’t imagine having it in both arms! You are my hero!!! Thank you for speaking the truth!!!

Thank you , dear Kathy Bates.

I was born with lymphedema, yet I discovered it at the age of 14. My arm was huge and my hand so swollen compared to the rest of my body. My mom spent hours online, googling what it could be and found a doctor who told us that there was basically nothing I could do, and that it would keep swelling, and there was no cure. Like him, there are so many doctors ignorant to our condition. Ignorant to what it is, and how to treat it. I was very lucky to find a physical therapist who helped me, but there are so many people out there that aren't even aware that they have this lymphedema. And that sounds really horrible.

She needs no introduction!!! Perfect Russian 👍 accent. Love💞 her...precious, intelligent human being and WARRIOR... So so... different than most of the self absorbed and arrogant actors🌟🌟

Thank you Kathy I have this condition .

I have a friend who has it and she treats it like it's nothing. She just keeps eating and getting bigger and, of course, the lymphadema just keeps worse. That would scare me to death. Amazing how different people handle this problem.

Dear Mrs Bates. I thank you so much for being an advocate for Lymphedema. I have suffering with Lymphedema since 1982. Just recently i went to the doctor for treatment and my heart was broken. I was without treatment for about 3 years after retirement due to not being able because of the lymphedema and diabetes insurance companies did not want to insure me. Now that i have insurance deductible is so high and i am unable to pay it the treatment that could get the insurance company will not cover it. Some Doctors i go to they act like they don't know what to do about my. lymphedema . i am so tried. Help me if anyone can give some advice in getting help to get treatment. Thank you Mrs Bates i hope you get to read this.

She is describing me when she described her mother’s lymphedema struggle. I relate with it all.

Thank you...I am not alone.

Touching

Kathy,. Most people have no clue how we suffer with this disease. They think it is no big deal. Until the medical community realizes that it is not just a side effect of medications, they will never get right. I have gone through hell with this disease and seriously hated God for afflicting me with it.

Thanks for fighting for us. I know its an up hill battle i know i have stage 4.

The closest lymphedema doctor to me is 60 miles away and I believe the only one in my entire state. My GP nor heart or venous doctors recommend any other doctors or treatments other than compression hose. No one has recommended massage thearpies or anything other than compression. I even developed 2 ulcers, one on each leg and was told to put antibiotic ointment on it and bandaids. Took 4 months for one to heal and the other is still there, not healed. Even with compression socks on the swelling is just as bad. I think tho not sureis there different garnaments for lymphedema & edema? I've read about short stretch but what is that? My venous doctor told me there was no cure and to keep wearing the compression stockings and that is it, no referal to any other doctor or therapy that may be available. I guess because there is nothing else available as of yet. You can't live a life where 24/7 all you do is put your feet up (not that it does anygood becaus the sweeling is still there. Even after sleeping a full night, when I get up in the morning the swelling is still there and an hour afterwaing its full blown swelling again. I truely hate this condition. I've not had any surgery nor lymps removed unlike Kathy but I can relate to her and her emotions.

Same goes for LIPIDEMA!

My error. Excuse me. The device is called a FLEXITOUCH.

I wonder if salt can cause this strange disease? I have never forgotten you since Misery and hope this "misery " soon has a Cure. My legs and feet are twice the size and salt causes pain. Even the smallest amount.

Please help I feel so desperate so afraid

Does anyone know if Kathy has had surgery to have her Lymphedema reversed?

Dear Doctor, In India, chennai From Pharm products company Having the medicine for actue and chronic inflammation edema and also for lympedema, Tablet LYMPEDIM 200mg 💼, also , this tablet recognized by most of the Doctors, And this will help ful to deserve patients

Educate educate educate before you get it! Prevention prevention prevention. There is no mystery! Drain drain drain! Keep moving!

I'M WITH YOU AND I HAVE IT AFTER THROAT CANCER SURGERY! It feels like YOUR body is trying to KILL YOU BY choking ME TOO DEATH! We NEED HELP AND funding FOR a cure!

Music is very very distracting!!!

Having breasts amputated during cancer treatment is often the cause of lymphedema. it's a cruel protocol that should be discontinued. With the multi-million$ being spent on breast cancer why are these outdated practices still being practiced?