Kathy Bates | The Road to Curing Lymphedema | Talks at Google
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- čas přidán 29. 05. 2018
- Kathy Bates (LE&RN Spokesperson and Actress), Dr. Stanley G. Rockson (Stanford University Endowed Professor of Lymphatics and LE&RN Co-Founder), and William Repicci (President and CEO, LE&RN) explain the scourge of Lymphedema and Lymphatic diseases, and the way we can change the future of millions through activism and research. They highlight the challenges that patients face, and the current state of care and treatment.
Lymphatic Education & Research Network (LE&RN): lymphaticnetwork.org/
Moderated by Jess Mega.
Kathy Bates is an American treasure. She's a compassionate and empathetic human being. You trust her. You watch her. You love her.
Yes I agree with you well said BLESS you 🙏💖🙏✌️
Well said!
I agree👍
Too with
All of
You!!
❤❤🌻🌻
Kathy impressed me because she showed us her self. What a cool gal!❤😂🎉
Cool for sure DotR
As a parent of a daughter with primary lymphedema, it was painful to watch this beautiful child get bullied at school on a regular basis because one leg was larger than the other and the opposite arm was larger than the other. I did my best to educate her close friends and our neighbors, but she was still often in tears for being left out of things because it impacted her running. She was born 46 years ago and her pediatrician didn't have a clue what he was looking at, labeling it as a vascular disease. She has been through breast cancer & uterine cancer. Because of her love for children and not being able to have her own, she became a KinderCare preschool teacher. I am so proud of her!
😊😊😊
Sounds like a special person. Surely you deserve some of the credit too
@@rinnyfaye4990 hi hi
Vvvcvvz 5:07
Ahhhhhh bless you and your daughter you both have beautiful souls and hearts of gold 🙏💖🙏💖✌️
I’ve had full lymph node clearance during a double mastectomy and developed lymphedema earlier this year and my arms and hands swelled up. I found that intermittent fasting with hand /arm exercises really helped and it has now completely cleared up.
Thank you Alison for sharing that. Dietarily, what and how are you eating in combination with intermittent fasting and arm exercises?
@@lindajohnson2149 just a whole food diet with the occasional treat. We cook from scratch and try to eat brightly coloured food. I’m not a veggie but don’t eat a lot of meat.
I’ve been considering the IF because of my lymphedema and to try and help with my lifetime of being overweight. Thank you for commenting. You have inspired me!
@@cydkriletich6538 The KETO diet is hard to start but works wonders! IF is the key to losing weight if you are over 60. I was struggling until I started IF. At least 16 hours of no food, 20 is better. The magic happens in those last 4 hours if you can do it. 16 pounds in two months and counting!
@@patriciabethbarker584 keto isn't good because of the high fats. I experienced considerable growth in my groin from two months of doing keto
I was diagnosed three weeks ago. I denied it for two weeks & cried and prayed non stop this week. But I’ve also devoted every waking hour to researching Lymphedema. Unfortunately I have it in my entire body, including my face & neck. I am so grateful I found this video and this group of people. I will never give up discovering and learning everything I can. I happen to love boots. I have 34 pairs of boots and am now living in crocs. I planned on giving all my boots away until I got a hold of myself and realized I was giving up. I’m no longer giving up but am praying for complete healing. I am also doing what I can to learn about this. Thank you.
I have only one leg swell but the shoes I couldn’t wear, upset me most. I rest often , Really often and keep my two swollen limbs, left leg, right arm in check. I keep those swelling limbs higher than my heart in sleep and rest and my Lymphedema fluctuates but I can agree, I get hurt feelings that my wardrobe has more clothes I can’t wear than the unattractive clothes that I can wear. The nerve damage has taken over 10 years to be able to wear jeans...one pair 12 and one pair of 14 and one pair of 16 to pull the crotch of my trousers any higher than my knees was such torment but I’m a lot better. I do hope with some time with your legs in the air, that you can wear those boots again. Oh, I sit on the floor and not on chairs and I sleep on a padded mat on the floor. It forces me to get up and down often. This forces the squeeze of nodes in places not addressed if I sit on a chair or sleep in a comfortable bed. Best luck Sweetie. Try everything but don’t get despondent...the longer you can keep the swelling minimal the more control you have in your life.
It's well
How did you find out ? How did it happen?
@@1969strangelove are you asking me this?
I’m happy to answer, just am uncertain if you are directing your question to me. 😀
@@starletd.1673 yes
Weeping here -- at 64 I have had LE since early teen years. I also have significant primary immune deficiency and probable Ehlers-Danlos tissue integrity damage. I HAVE HATED MY SWOLLEN LEG/DISFIGURED BODY IMAGE ISSUES. So many life pursuits have been affected by this.
Finding this video is ANSWERED PRAYER. In spite of asking about this of EVERY PHYSICIAN SINCE THE 80'S, and not one could address this properly and competently. Thank you to this panel and to Kathy Bates for championing this need for awareness.
I see a lyphoma massage therapist. You casn order compression garments and a compression pump. Some of this is covered by insurance
Just saw this video. I am 73 and was diagnosed with lymphedema a few weeks ago. I will be going through 6 weeks of therapy. Just starting to learn about this. I have Crohn’s disease among other issues. This one is knew to me. So from what I heard in this video…..God help us all……and he will. He has gotten me this far.
Lymphedema came out of nowhere and ruined my life. Only now am I getting information and hopefully find solutions and healing to this problem. Thanks guys. And, a special thanks to Kathy Bates... how I admire you. I wish I could talk with you more and you could be my friend. How impossible is that?
Thank you SO very much for this video. I can’t stop 😢. I was born with Lymphodema and am almost turning 65. I have stage four Lipo/Lymphedema and have felt so alone most of my life having been pushed around by GP’s who have told me to go away and try to lose weight. I lived in Zimbabwe and South Africa and came to live in the United Kingdom 18 years ago. I started looking for answers 15 years ago and did a lot of research, finally had the courage to tell my GP I wasn’t leaving her office until I had a referral to Professor Mortimer at St. George’s Hospital in London. I went on National Television to see if I could raise awareness for this terrible disease. I so badly want to get involved wherever possible to share my story on how awful its been living like this. 💕
Sending you love from Seattle, WA USA ... lymphedema is so debilitating, sorry you have this. But know there is nothing wrong with your soul or spirit.
@@deirdrem9320 Bless you Deidre for your kind words. X
Getting the word out constantly will eventually reach the right ears to make a change for so many! Thank you for your courage. I was hospitalized with Covid for 3 weeks & 1 1/2 years later I still have long covid & kept asking what’s wrong with my legs. No one paid attention. I finally said I think i have lymphatic edema all over my body on top of everything else. I’m researching & getting the word out.
@@deirdrem9320 Ditto! Sending love and compassion from Seattle!
I am so sorry you have had to live with this. Wanted you to know I care. 💕
This video is my first real “find” in my periodic search for the weird lower leg and ankle swelling I have increasingly experienced in the last few decades of my life. I’ve had my heart checked, been to several doctors, been told to drink less water or more water, eat less salt or more electrolyte salts, use compression stockings, don’t use compression stockings, take different “water pills”, check heart again, you name it. When my friends wear cute Florida strappy sandals, I’ve had to buy “old lady” shoes that cover my huge feet, along with long pants or dresses. The internet offers little to no help, but this time I must have typed in something different because this video came up… plus I love Kathy Bate’s work! She is brilliant and terrifying! I will be following the leads on information that this video has brought forth. Thank you, all!
I had vein work done and my lower legs are great. The lymph settles in my thighs now. I recognize that I gave a problem, but, I don't know what else to do.
I'm with you. I guess mine probably comes from a lifetime of smoking, but the doctors don't have a clue and aren't interested. My left leg and foot swell so that it feels like my toes may burst if I walk on them. I take water pills which help a tiny bit, but the only thing that helps completely is to lie down with my feet elevated. After an hour or so, they go down...but a half hour after I get up, they are just like they were. I hope they can figure out what to do about this.
Regarding diagnosis the medical profession is pathetic. Most of the time people find their own way of dealing with their problems. Know I do! One of the worst cases was of a little girl taken from her mother because the powers that be said her mother was abusing her. The mother was allowed to see her but only under supervision. A doctor on a plane was reading about this in a newspaper. He thought about it and it didn't seem right. He took steps believing the little girl suffered from a rare disease. Sure enough he was right. One of the few times a diagnoses was right and done in a remarkable way. The little girl was returned to her mother. However what about the doctors that had looked at the little girl before and diagnosed abuse!
@@bostonblackie9503 as a retired medical professional myself I agree with you and I too am becoming increasingly frustrated with the medical profession. I feel every time I go to doctor I’m prescribed a medication and told its idiopathic, no cure , no idea what it is. There are some good ones out there, but we have to be our own health care advocates. In a country such as this, it’s really quite a shame.
You were told to not wear compression stockings? That's odd. When I discovered that I had persistent swelling in both legs that didn't respond to elevation, I remembered from nursing school that TED hose helps. So I found them in the drug store and wore them for 5 years before a doctor diagnosed the problem. I did go to a cardiologist all those years. I thought it might be from congestive heart failure. I do have atrial fibrillation. He did not say any diagnosis about the legs though. He put me on a diuretic. I was pleased to see that it has a name and there is a Compression Management Clinic that measures for custom made stockings. I was getting 6 pairs a year until they canceled my appointment because my insurance company refused to pay for more than two pairs per year. They used to pay for 6 because the elastic stretches out. They quit caring about that. Actually I paid for the two pairs because they imposed a deductible that was the cost of the stockings. So now I am wearing the old ones that don't have enough elasticity but I use velcro calf wraps over them. My lower legs are quite normal. I am happy to wear my usual shoe size but I bought a stretcher for extra width. The problem now is that lymphedema is filling my thighs. It's relatively mild but the bulging is not nice. Physical therapists recommend Spanks for that. It's too hot for them. Besides, where's the fluid going to hang out if I squish it up some more? Perish the thought!
THANK YOU KATHY AND THANK YOU TO THE REST OF THE PANEL FOR BRINGING THIS TO OUR ATTENTION.
God BLESS YOU ALL
Holy Cats! KATHY BATES!! You go girl! Your delivery and presentation is Gold and understandable and gives connection to people that don't understand.. Thank you for you and your work! 💜
Thank you Stan and Bill also!!! Keep up your amazing and worthwhile work!! Please:)) !!💜
I realize I'm late this conversation. But I'm curious what others know about lymphatic issues being affected by nutrition? Conversely, lymphatic problems being caused by carbohydrate rich diets...?!
And please, I'm not insinuating anything, I'm just genuinely curious. My mother had an issue with this, her partner did, and a number of my friends do...
@@youtrades…
😊9😊
@@youtrades Your body chemistry changes when you have Lyphodema. The estrogen, protien and cortisol find a nice nesting place in the adipose fat tissue and this wonderful combination makes losing weight IMPOSSIBLE. You can starve your self silly, change your diet and fast all you want. Until they can turn on your "saeity" gene, you will struggle and fail;. Been there. Wecovy and ozempic and drugs like then are the answer. Once you have the weight under control, you still need to be active, do the right excersise, take seleinum and find a healthy lifestyle you can maintain that includes some intermittant fasting and a Keto or Paleo diet.
I'm so very grateful to learn of this organization, and applaud the eloquence and determination of these speakers. I developed LE within a month of ending chemo, had months of delay in getting the LE treatment needed, due to ignorance of my medical team. Just this week, after a year of successful, semi-regular lymph therapy I've just been notified by my HMO medical group that continued PT services are denied because the 'MCGI 25th edition guideline A-0361 Lymphatic Drainage Manual specifies a patient must use compression bandaging for at least 22 hours a day, AND doing stretching and strengthening exercises while wearing them'. That's is just CRAZY! Imagine, as Kathy Bates suggested, your leg is cast in concrete, you're taped up tight as a tick in compression bandaging, but get on that treadmill, stationary bike or what have you and start working out. Forget any healing and restful sleep too, because this 'guideline' apparently thinks your body only needs respite from compression for 2 hours a day. Maybe this regimen is actually necessary for Stage III LE patients, God have mercy! But I'm still a stage I, having improved from stage II with LE massage therapy sessions, doing daily stretching, and walking 1/2 to 1 mile a day. My condition improved, but isn't static, it changes and I am more in need of therapy at times than others. Treatment needs to be dictated by the disease in the individual, not some cookie cutter one-size-fits all approach. I don't know what I'm going to do now. So angry--and scared.
May I ask which HMO medical group do you belong to so that I may be better prepared for that? Thank you in advance.
fight it. most insurance companies have a group that can review denials, and often they’re not medical professionals. throw all the data you can at them - you have nothing to lose. good luck.
The Western medical system is BROKEN. My current Dr has prescribed me a massage a week for Lymphatic massage. Do you think I can find someone who takes insurance? NO
Not only that but so few physicians are up to speed. I purchased and wear compression garments for my upper body (shoulder and left arm) but wearing them daily is uncomfortable.
I was just diagnosed recently with lymphedema in both legs due to inguinal lymph node cancer and radiation therapy. My oncologist referred me to LMT and they said their next available appointment is on 8/2024. I have to wait 11 months to be seen😢The doctors and insurance companies doesn’t know what we’re all going through. I did my own research and found a good LMT in town to help me and I’m paying on my own. Also the tutorials online helps. Praying for all of us🙏
I
To all of the people involved in this video - Thank you.
So simply put. Nice.
So happy to have come across this. Thank you! This validates my hypothesis. I have been taking a mechanical approach to it and all the the exercises I came up with are actually out there in the world already. I need to continue my studies on how my diet impacts it. Thank goodness for CZcams for having the platform to spread the word. Back to my rabbit hole....
FYI, czcams.com/video/krBvYTfxJks/video.html Eating to Starve Lymphedema & Lipedema - Chuck Ehrlich, MS, MBA - Patient Symposium 2019
I have it. My cardiologist said, "fluid coming out of your leg? That's not my department." My internist said, "I know it's lymphatic fluid but I don't know how it's treated." Thank goodness for GOOGLE/CZcams!! I'm getting an education.
Checkout Dr Robert Morse, ND, here oin CZcams. He has so many videos about subject. You'll learn everything you need to know about the lymphatic system.
The dr is really honest to admit they dont learn in medical school.
me too
I had the same problem with my internal medicine doctor. She told me she didn't know much about it. Then I had another person, a psychologist thought a person can only get it in the arms.
It's aggravating, because if only my original doctor had known something, it could have saved me from having lymphedema...
Friend of mine had lymph nodes transplants from her gut to under her arm, it worked and her arm returned to its normal size. Why isn’t this op available to more of us with lymphedema .
I got a consultation from Cleveland Clinic and the Doctor told me about that same procedure. It just hurts that the surgeries are so expensive. I was diagnosed with Stage 4 Breast Cancer at the age of 23. I removed 1 breast. Then years later I took off the next Breast ( it wasn't cancerous... but the lump was irritating). Then the moment I decided to get reconstruction. The fluid from my arm reached over and gave me an infection. Luckily My Doctor caught it. Then I was told that I have to deal with my arm, before I can get reconstructive surgery. This is soooo expensive. In the Bahamas is where I live... Gofundme accounts are not supported if you are not in the right clique.
Wow that’s fascinating. Can you mention the hospital and Dr. She went to.
Awesome. I was not aware that there was a transplant for it.
Not only do most doctors not understand or acknowledge lymphedema, but neither do allied health professionals. But more challenging for many of us is that it is an invisible, unseen disease, which can result in disability, pain and loss of function. It can result in social isolation and depression.
Whether it is primary or secondary lymphedema, it takes ongoing treatment and care, which can be costly, as many treatments and necessary compression garments are not covered by insurance. It helps to know there are people who care.
Every time I watch one of these talks, I'm reminded of an exact experience. I too once had cellulitis from a tiny scratch. It was mind boggling how in 24 hrs absolutely nothing turned into a green baseball on my shin. I too was put on antibiotics, which almost killed me & the doctors were useless.
I'm convinced my mother has lived with obvious, yet undiagnosed lipedema, her entire life.
I now know what is happening in me, my daughter & my granddaughter. Surreal.
I love Kathy Bates. Shes a hero.👏👏💕
I had stage 3 Uterine cancer in 2019 and had a full hysterectomy and also had 19 lymph nodes removed. I started getting swelling in my left leg and terrible fatigue so I went to my doctor 4 times in 3 months to no avail. I finally did my research and self-diagnosed myself!! I called my Oncologist and went in the next week, only to get my diagnosis confirmed. Not once did any of my doctors mention any of the complications that could happen any time after my surgery. I had NO IDEA that this could happen!! What do we have to do to get our doctors to inform us of any complications that could follow?? I'm so frustrated!!
Did they tell you what was going to happen when they removed all those lymph nodes? If not, why not?
Omg I am in tears everybody on this panel is amazing. Ms. Kathy Bates thank you for sharing your story and others suffering from this disease. I had a partial hysterectomy in December 2020. I developed lyphedema after my surgery. I have been struggling since my surgery. I am so fustrated but my God a million thanks.
Kathy the video I just watched was so overwhelming it brought me to tears to know there are so many others suffering from the disease. I was a healthy 81 working till the pandemic and decided to have my hip surgery thinking I would return to work when the new school year starts. Needless to say my surgery dod not go well, my Siatica nerve and a lymph node were damaged, leaving me with lymphedema and foot drop in my left leg and foot. I have tried quite a bit of different alternatives to no avail. Now I know that there is no cure. Thank you, Mary in Az
Hi, my knee surgery brought my lymphedema into being. Can be very challenging. Mine is in my legs. Are your legs affected too? My pt hooked me up to a machine that compresses my legs. I'm 66 had my knee done 3 years ago.
This video also brought me to tears. I developed lymphedema in my left arm following a pacemaker placement 10 years ago. I live in a rural area and have no real help. It's the pits, My love to all of you suffering from this.
@@marykrey8977 ppl
Mine came from a partial hysterectomy as well! I wish they'd told me about this disease, because I certainly would not have gotten one had I known about this mess...smh!
I’m a 61 years old women that has primary lymphedema since I was 10 years old. 51years of this has not been easy. Pray they find a cure 🙏🏻
🙏 for you. ❤
🙏🙏❤❤
😇👍👍🌻
I also have primary lymphedema in my lower extremity. What have you done to help yours? The lymphedema clinic wants me to do wrapping, but I hate it. I need ideas.
Serrapeptase and trampoline 🙏🏼
I was born with it - total body. I understand. It can be very, very frustrating, painful, exhausting. I am praying
Kathy begins speaking - 09:25. My favorite actress of all time and has been from earliest days.
I have edema bad one leg was close to three inches larger than the left leg an my hands so big I can't close my hands if I force it it's painful an itches. The drs keep adding me from one to another each saying ,,nope isn't from kidneys it's your heart than heart dr says opposite now onstage 4 renal failure an can only get the machine thank you all on stage mostly mrs KATHY
So intelligent---and you can always see her intelligence in the roles she plays, and her 'acting', wh/ shines w/ her intelligence.
I have Lyphedema and so glad for this. It explains so much and it’s beyond just doing exercises and being told to prop you legs above your heartline
@O K Dont you also just love the ones with God syndrome. The berate, belittle and bark if you dare research on your own to help or partner with you for your healthcare. A good doctor to me is one that is never through learning. I promise they put their pants on, one leg at a time just like the rest of us. I’ve been doing a yoga pose where I’m in floor on my back, but up against wall and my legs are up the wall (20 mins) along with ice pack on feet.
Here is something else that I’m onto FOR ME! This happened to me first when I was pregnant. The worse of it was after giving birth when hormones are batshit crazy. Early menopause, crazy crazy hormones, what happens, feet start swelling, and I have “cankles”. I wish I had something like they put on you in the hospital that periodically massages, compresses, etc your legs to keeps your circulation flowing. I’ve heart estrogen (excessive) causes much of this. I don’t know.
For those with will power (I’m not person today), I’d try full fledge keto/even carnivore or full fledge vegetarian. I’ve had a lady PROVE to me by doing nearly 98% carnivore, amazing results. I’m so in awe of her mind because she set out on a mission and accomplished it. My two vegan friends, BOTH ended up with cancer. She’s been given months to live and is now trying to go carnivore. I’m afraid it’s a little too late. I’d love to see a miracle.
Yes. Many of my clients can't even prop their foot above their heart line. Not without help...and there is already so much to do to help the disabled and many certainly don't WANT to put their foot above their heart because there is stuff to DO. It takes longer to get the stuff done when a limb or two is too heavy to move...and generally there is another condition they suffer from additionally.
I live in the UK where there is only the barest of knowledge about this DISEASE ,generally between people who have it. I was diagnosed with bowel cancer, stage 4 when I was 74. I had always lived a very energetic life, raising four kids, moving from country to country. I did my usual researching when I started on my cancer journey, following links on line, reading medical studies, talking to people etc. Then I began to follow the advice of my consultant and oncologist. I had a simultaneous resection of the bowel & liver. (There were two tiny tumours, which they completely removed) I am/was a pretty healthy strong person and went through the 6 hour surgery well. I recovered without any problems. Then they began to talk to me about chemo. I was not keen on the advice, feeling instinctively against the thought of the poisonous chemicals (FOLFOX) after talking to doctors and professionals I agreed to have 12 infusions of the chemo. I was seen after each infusion of the chemo by the consultants to check my reaction to the dosage. At no time did anyone speak to me of LYMPHODEMA, ever. I was given lots of details about other after effects of my treatment, but nothing about Lymphodema. I am a patient who always asks questions, many questions, always, so I cannot understand why this was not brought to my attention. I live in London, and the hospital and consultants I saw were described as “World Class”.
When both my legs started to swell enormously and hurt, I bought this to my consultants attention. The remarks I received were: “sorry I don’t do legs”, “do you realise that ten years ago you would not have survived this operation, we saved your life!” No one seemed to take me seriously. I became invisible. This was all made worse by the fact that the pandemic started, and in London, most hospitals stopped doing their usual treatments.
So I was left, in remission, with swollen, painful legs which greatly affected my mobility and the way I looked. I became very depressed and had no one to contact. So I turned to the internet (“Dr Google”) After days of searching I found Dr. Gordon Rockson. It was amazing listening to him talk about his experience in the US. Then I found Kathy Bates and LEARN. I found one private clinic in the UK called “The Lymphodema Clinic” which was in Oxford. So I called them and got an appointment to see their consultant. At a huge cost I travelled to see them and was examined by a consultant. But he told me that he didn’t think I had Lymphodema. He said that Lymphodema did not cause pain. He told me that he had no treatments that would help me. If you check out his website “The Lymphodema Clinic” you will see all the procedures he lists. But, because he thought I did not have Lymphodema, he said they would not be suitable for me. I was so disappointed.
I have tried many times to get help in the UK, but no one seems to know how I can get help. I have spent money I really can not afford to no avail. I’ve even thought of trying to visit Stanford teaching university, but I’m a retired woman living on my own with a small income. I’m 81 this year and I’ve lost so much of my life, unable to do the things I’ve always loved; painting, photography, playing with my grandkids. I had stopped looking for help but every now and again I see things like this on CZcams and become angry and frustrated at all my loss. I know that the doctors think that they’ve “cured” me, but at what cost? Diana DEEKS.
Only by watching "Bob and Brad, the Two Most Famous (in [their] opinion) On the Internet" did I learn - last month, during a stretch of painful weather - a name for what has kept me in bed for eight years after I broke my ankle. I started doing their exercises and they helped enough that I've been rearranging my apartment, and my life, to accommodate my new exercises. I watch B&B every morning while I do lymph drainage on myself, so the algorithm noticed, and here you are! Thank you, thank you, thank you. I'd love to tell my story and how I got here, but I don't think Comments is really the right forum. However, if you respond to this one I'll be notified, and I'll help you as much as I can. For free.
I also love Bob and Brad. They are the Bert and Ernie of physiotherapy. I'm glad you were able to help yourself. You're right. We have to be proactive for our own health.
@@katella During the unstable weather, lying in bed, I watched B&B and did the exercises. When Spring arrived, I felt so much better that I stopped doing them and started exercising more. Wrong approach 😂. The exercise helps, the lymph drainage helps, but neither is enough on its own. However, the lymph drainage improves the exercise, and I can't think of any logical way exercise would help lymph drainage.
Yes. Please leave the links here. Thank you so much in advance ❤
I am so happy Kathy Bates spoke out about this, it's like being left flapping in the wind once treatment ends how to deal with side effects of those life-saving measures (in my case a right breast (cancer) modified radical mastectomy with axillary lymph node dissection (tests confirmed spread to my lymph nodes, otherwise they would probably have remained intact), along with post-op radiation likely causing further damage. Encountering swelling in part of my right hand and wrist, currently working hard to stop and reverse it. Makes me feel less alone and encouraged me to seek answers and help where I am able to get it ♥Going to get lymphatic massages, lose weight/fat (adipose in particular), hydrating properly, the list goes on. But just this prod got me to where I needed to head. Should also note both of my parents suffered from edema in their later years, where I am at now 😬
Kathy, you were marvelous! Praying your word spreads around the world and you find healing. God Bless You!
I listened to your lecture last night with Kathy Bates on lymphedema. I have had lymphedema now for two years since my cancer surgery he took out all the lymph nodes on my right side. Needless to say, I am.
Debilitated mentally physically psychologically I went to the doctor today the first time in two years that’s how long it’s been since I’ve even been out of the house I’ve gained so much weight is always hurting when I mentioned it to my doctor. He just said yes salt will do it. It isn’t only salt. I do not know who to contact anyways thank you. I did learn an awful lot. I did learn that I am not the only one.
I would love to get involved with LE&RN. I’ve been an advocate since I was diagnosed. My onset was May of 2001, my lymphatic system crashed during my 8th month of pregnancy. I was misdiagnosed for four years, one doctor almost killed me (literally) and by the time we knew what it was - Primary Lymphedema - I was systemic and had pooled 110lbs of fluid because I took the water pills and exercised (without compression) like I was told; I was labeled fat,p constantly. If I did research and brought it to my doctors I was labeled a hypochondriac. The biggest issue and the reason why doctors don’t explore it further is because they can’t make money on it. Here in the states the rule is “no pill no insurance”. I have a million stories and am actually working on a book. LE is debilitating, I know the rage.
Thank you for sharing your experience
Thank You so much!
Best wishes for the book. I've got a different and more pleasant experience than you. (State funded health system, + top-up insurance required by law, usually comes with job. Mine costs $80 per month and similar ones are available free to people on low incomes, or between jobs.) At the first sign of lymphedema I was prescribed pressure bandages, had massage twice a week and 2 direct drainage sessions on particular, leaking "bags" at a clinic. All free except dressings, because I chose not to have them on my "top-up". My family doctor was not optimistic but said these were simple things which were worth trying before seeing a specialist. The drainage was a quick relief, the massage effect was slow and effective. All that is left, 11 years later, is my right arm slightly larger (1cm or or under 1/2 inch circumference at the largest part) but with some loss of feeling.
@@pynn1000 what the heck are leaking bags?? PLEASE SHARE MORE ABOUT YOUR REGIMENT. PLEASE!!!
@@EmmaDee "Leaking bags" [warning - disgusting details] were egg-yolk sized swellings filled with lymphatic fluid round the unhealed wound from which armpit lymph glands had been removed. The breast cancer wound healed in days, the armpit took weeks. The "bags" were first managed, badly, with elasticated bandages over the sterile dressings. (The upper part of my arm was easier to manage as I'd been lent a metal device to help apply proper pressure bandages.) The lymph leaked out through the stitch wounds, soaked dressings, sometimes clothing. Massage treatment started 2 wks after operation, at 1st daily then every 2 days, very light, very slow, 1 hr sessions, different from any other massage I've had. At first the wound wasn't healed so physio didn't go nearer than about 8 inches, but the "bags" were visibly smaller within days. The arm was as it is now by the end of week 4. As my doctor said, this doesn't work for everyone, but I'm glad I had the chance.
As a CLT, I appreciate your sharing this video and your journey to spread awareness about Lymphedema ❤️🙏
I have arm Lymphedema from breast cancer, cut, burn, and poison treatments.. meaning surgery, radiation, chemo . . my worst fear happened being told I had Lymphedema . . which considering how profound having stage 3 cancer is . . this should tell you how devastating Lymphedema is . . I describe it as a lonely disease that no one understands not even most of the medical community! LE&RN along with Kathy Bates are doing so much to help . . in so many ways . . most importantly given me and I'm sure others respect for how hard we struggle with daily life ..sorry I start crying when talking or writing about it . . Blessings to everyone dealing with this disease and Thanks to all that are trying to make change . . It would be so great if insurance companies would at least pay for compression garments . . anything to help!!
Until they are forced to help us, don't hold your breath.
My 83 year old Mom has been struggling with this for 4 or 5 years. I am going to share this with her.
I have lymphedema in my left arm and hand after having breast cancer lumpectomy in my left breast. Then I had another surgery for lymph nodes to check the sentinel nodes which the surgeon could not find and closed me up. Then a 3rd surgery to remove lymph nodes. She said up to 10, I asked for only 5 or less. After surgery I found out she took 29 lymph nodes. I was very angry. No one understood. I am still angry, but trying to move on. I had a few weeks of physical therapy, two different types of sleeves for day, one for night and a pump machine. This is for the rest of my life! It's nice to know that you are working on a cure. I felt validated when Kathy told how angry she was. Someone gets it.
I just found this and I am shocked! My doctors told me this is just sometimes a reality of breast cancer survival. They sent me to a physical therapist specializing in lymphedema. She saw me twice. Measured me for a compression sleeve and told me how to do a couple of exercises, printed out 3 pictures of the exercises but NEVER touched me. She said I would be fine but would have to wear the sleeve everyday for the rest of my life. Fast forward a couple of years and one shoulder surgery later (that I put off for 10 months because I was worried it would get worse again) cancer doc and ortho guy said “nah, it will be fine”. They lied. It is much worse. My hand looks like a baseball mitt and my arm tingles constantly and swells up most days it feels so heavy.
I live way out in the boonies so no nice clinics within two hours of here but you can bet this girl is diving into this site and any others I can find! Thank you panel I feel like I have been thrown a life line.
Any suggestions gladly accepted💚
I have also found relief with Diet. KETO and intermittent fasting
@@patriciabethbarker584 keto and intermittent fasting at the same time?
@@shodson314 Yes, also take selenium and do the manual brushing twice a day, morning and night
Thank you for raising this issue. I had stage 3 breastcancer and developed kymphedema. During 5 months of chemotherapy AC and Taxol the swelling decreased. After a mastectomy and complete clearance of lymph nodes on the right side and six weeks radiotherapy the lymphodema returned. The right side of my torso swells with heat. My arm swells and the bra with prosthetic becomes a tourniquet, painful and debilitating. I applaud what you are doing. I am alive against the odds. I am eternally grateful to have survived cancer. I live in hope of a cure. I live in Dublin, daily I meet people who have never heard oh lymphodema I am so grateful for this talk. Now I can spread the word.
Wishing you good health.
I am having an episode right now
, (not cancer related )
I had an accident 20 years ago & there was extensive injury to my left thigh.
Of which I recovered - over 18 months.
> I recently had a flare up - in the same leg / possibly triggered by sitting for too long w/o walking.
> I found a good video on dry brushing the skin - It’s very helpful !
Check for it on you tube.
@@BarbaraMerryGeng Skin Brushing works! I do it daily and when I am at the gym preparing for a swim, I make sure to brush my skin for about 10 minutes to get things circulating before getting into the pool!
I am astonished at just how clueless many Doctors are about this. We were lucky: hubby is a veteran and in the NY VA hospital we were given a FlexiTouch system, compression device. They even sent a techie to the house to tutor me, and make sure I knew how to set it up to obtain maximal benefit for Ric. Four times a week, he has a half hour each lower leg. It has been two years now, and ...What a difference!!!
Thank you for sharing
That sounds wonderful the machine for your husband I'm just at the beginning of all of this so I'm just playing I need all the help I can get in so thankful for your husband but he has let machine in Haughton great weekend thank you for the information
I know. Let's cancel mars missions and use the money on earth!
I’d love to know more about your health regiment and whatever that flexi thing is.
@O K Until more important people get personally impacted and/or involved, lymphedema will continue to be sidelined. If Elon Musk and Jeff Bezos etc, would wrap their arms around this, it would obviously get more attention.
--> Even better: wouldn't it be great if we could move from our sick-care to a true health-care system which actually tried to prevent disease instead of just putting a band-aid on the symptoms?
Actually brought me 2 tears..i developed lymphedema in my right leg as a result of cancer op..the doctors r so dismissive of anything i say..so i gave up bothering with them at all..so glad and relieved to come across this..i will definitely support lymphedema day..God bless u all..x
Thank you Kathy Bates and Dr Rockson !!!!❤️
I started dealing with extreme edema over 10 years ago. I have had tissue weeping, compression therapy, had blood vessels burned out. Two years ago I was told I had moved into lymphedema. I was told to change my diet and we were going to work on more compression therapy, and then I came down with severe covid. I was hospitalized for a month. I have had many life changes since then. There is some improvement, but it isn't gone. I don't think it ever will be.
Thank you all for this video. It is good to see movement in acknowledging this disease and looking for treatments and eventually a cure.
I had double mastectomy Dec 2019, then radiation. Jan 2022 I called surgeon's ofc ref pain in upper right back & was referred for therapy. There I was given a printout of lymphedema massages they performed.. I then did research on lymphedema & was astonished doctor or nurse never told me of this after effect. I had lymph nodes removed under right arm & armpit swells & stings. I requested this pamphlet. This video was an eye opener.
Kathy is such a nice lady, and spokesperson for this disease. I remember watching her on her legal show.
Thank you Kathy for sharing your story. God bless you 🙏🏻
The Lymphedema I have seems to have started in my late 50's. I have been told there is no cure, it is inherited. My left leg swells more then the right. So I have to have different sizes of compression nylons. I also heard you can get this from a mosquito bite are a cat scratch. Once a man saw my swollen right leg and asked where can I get a prosthetic like yours as his son was missing a leg. I told him my leg was real, and he apologized for thinking it was not real. What I am thankful for is that the swelling does go down at night. I also use a top of the line lymphatic pump system. So I am also believing the Lord for complete healing. I think the Med Beds coming out will be the answer for every disease. Love that by accident I found this video on You Tube. Love Kathy Bates. She seems like a very selfless woman.
What is the pump device you have and where do you get it??
Is the pump covered by your insurance?
This is a marvelous talk, many thanks for all the panel members. I have had lymphedema for over 20 years. Thanks for giving hope for all of us.
Thank you for this. My Dad has this and his doctors only body shame and tell him he needs to loose weight and it'll go away. He has so much pain when he walks and is so discouraged. He comes from a time when doctors were empowered to actually HELP. I don't really think they have time to research every condition. Thanks for this lecture!
My children do not understand, either. They are nervous to discuss it and they both think it's because I am overweight, period.
😂😂
Amazing Video, my heart is touched, my life has answers and direction and gives ability to help others, thank you!!! Tears and prayers to all!
Oh my gosh, thank you so much for sharing....all of you. I can't tell you how helpful this info has been. Just, thank you....remember to breathe.....
Awesome video! Thank you Stanley G. Rockson and Kathy Bates! God bless you for bringing awareness to us all. This is helping me learn so much about my own lymphedema. I don't feel so alone and it feels so much better to be educated about it as much as possible and you explain it so well. I wish you were my doctor!
I have LE from breast cancer mastectomy with lymph node removal in one arm in 2013. I had physical therapy with a lymphedema massage/physical therapist and had to pump my arm twice a day for many years. Also, I wore a compression sleeve and glove during my waking hours. I have not been on a plane and not sure how my arm will react if and when I need to fly. That said, in February of 2020, I started a Whole Food Plant Based lifestyle with no Sugar, Oil or Salt due to other health concerns (diabetes, thyroid, cholesterol, psoriasis, etc.) I don’t remember how long it was when I started noticing a drastic improvement in my LE along with a complete reversal of all other health issues. My personal conclusion is that food matters and I will continue this SOS free WFPB’d lifestyle for the rest of my life, knowing I have the added bonus is having my LE under control.
I’m researching this condition for a job I’m interviewing for and was pleasantly surprised to listen to Kathy’s story. I’m a Hugh fan of your work!
Kathy Bates your story would make a great movie about trust and bodily integrity.
I was told I had lymphedemia by my physical therapist. I had a knee replacement and my knee wouldn't bend like they wanted it to. She hooked me up with a machine that I put on my legs which compresses them and it has helped. Thankyou for this eye opening video. God bless you.
I have been just diagnosed with lymphedema in my right leg. I am so glad that I found a specialist from Saint Jude medical Center in Fullerton California that is helping me with this disease. I’m so glad that I found you Kathy Bates and other doctors on the CZcams channel talking about this I can understand it better and now I’m trying to understand what it is I’m going to do now with the rest of my life having this disease.
It’s always a treat to listen to Kathy , great information.
I love you Kathy. I have been your #1 Fan since seeing you for the first time in Misery back in 1991. Thank you for all you do to make more people aware of these awful lymphatic diseases that more than 150 million people all over the world suffer from. If it not been for you, Kathy, I would not have known about this. Thank you for bringing these issues out of the dark and into the limelight. As your #1 Fan, I have made your passion my passion. I am now a monthly member of LE&RN. I want to help set up a LE&RN chapter here in Oklahoma along with an annual run/walk fundraising event in Oklahoma City eventually. I look forward to seeing you again this year at the 4th Annual Run/Walk near the Santa Monica Pier in California this June 24th. I have already paid for the walk whether or not I run or walk. I will also bring with me an extra $1000 to present to you along with volunteering my time to help out at the event.
What a wonderful and informative video. Thank you!
I found this video so unbelievable helpful. I'm so glad Kathy shared her story. I got lymphedema seven hears after my mastectomy and a year and a half after my axilla dissection (which removed several lymph nodes) and radiation therapy. It's so difficult to find a PT who specializes in lymphedema so I've been doing a lot of research (like this) and trying to be proactive. Thank you for this wonderful educational tool.
Thank you! Thank you! Appreciate your work in education and work towards getting help for all those who suffer.
I'm a caregiver searching for answers to aid my client. Doctors did tests and made suggestions for using pressure socks. Yet there are days the area is too enlarged for that.
Your video helped me remember a physical therapist who specialized in lymphatic massage.
Hoping those who suffer will find relief.
I'm so glad I found this video and LEARN. I'm 52, diagnosed with secondary lymphedema after a sentinel lymph node biopsy for melanoma. My left leg is affected by not only a massive scar and trauma from the cancer surgery but also by lymphedema. It's only been 3 months but the lymphedema is worse than my cancer treatment. I have PT twice per week, thigh to toe compression stockings and a mechanical pump to help move the fluid from my leg. I'm furious and heartbroken, it's depressing to know this is my new lifestyle. My surgeon who I appreciate for removing my tumors, basically handed me off to oncology for tx. Thankfully she listened to me and got me into PT. But surgeons need to inform their patients of the risks. I was totally blindsided, and as a working mom to 4 kids, this is a huge obstacle to enjoying my time with them. There so needs to be more research and noise regarding this debilitating disease. Cancer is bad enough, this is worse.
I have the same experience. Thank you for sharing yours.
If you are vaccinated and free of wounds, swimming is amazing for painlessly reducing the swelling.
Doctors don’t take the time lo listen. I have gone to 5 now and no one had answers for me. I’m very sorry about how difficult your life is now. But please ur a strong person and u have children to be strong for. I pray that your children laughter snd love help you overcome.
@@k8eekatt please what vaccines? Thanks
@@cghrios783 check with your doctor. There are types of pneumonia that can be a real problem for people with impaired immunity and also shingles.
I love you guys. Thanks Kathy Bates..I love you!
Finally someone who really knows..Explained this illness very well.
I diagnosed myself, doctors were scrambling around like dummies. Smh
Thank you so much for this educational video about lymphedema. I am a cancer survivor and suffer from lymphedema post hysterectomy and radiation. It is awful to cope with. Pain and swelling in feet and lower legs and pelvis after 29 lymph nodes removed as part of uterine cancer surgery.
So sorry! I had 3 removed on either side after uterine c, along with full, rad hysterectomy. 1 lymph on left had cancer. That ankle is beginning to swell, that’s why Im here. Following Dr. Berg and the lady doc with long dark hair too. Both excellent. Good luck internet friend
Great job supporting the search for a cure or improvement for this problem with compassion and humor. I have the care of a wonderful doctor at this time and have experienced what a difference a good listening and committed doctor can make. Patients and doctors and medical educators working together through these difficult times are the hope for progress to improving both longevity and quality of life. Let’s support one another and persevere respectfully to reach our health goals.
Thoroughly enjoyed Ms Bates heartfelt share. Informative presentation. 👍👍
Wonderful video. As a CLT, it breaks my heart to hear these stories. There are modalities that can help improve lives. This is a mighty force to help educate people. Thank you to you all!
Thank you so much to the doctors and to Kathy Bates for all you do in raising awareness and working towards a cure for this condition, or disease. I’m so used to calling it a condition but after watching this maybe I should start calling it what it is- a disease, that needs a cure! I have it in both legs from cancer treatments I received 13 years ago. I literally started crying when Kathy said “it is like your leg is in jail” because it’s so true. I feel like it’s chipped away at my life for 13 years and has robbed me of so much joy. The countless infections and hospitalizations are the hardest part.
I sometimes feel as though I live my life a slave to my legs. From the moment I wake up to moment I go to sleep I’m doing things to keep the swelling down. I put compression garments on both legs which is a workout like no other, take supplements, watch everything I eat, try to exercise, wrap, go for physical therapy, do self massage, use pumps, and wear thick heavy night garments while I sleep that are like two giant oven mitts over your legs, and living in Florida I can tell you it’s a nightmare, that’s not to mention all the surgeries I’ve had. Four lymph node transfers, Lymphatic liposuction, and one bypass. It’s gotten better but it will always be there.
No one should have to live with this. It’s just awful and makes you feel ashamed of your physical appearance. I used to be much more outgoing and I loved to dance and go to the beach. I no longer do those things but watching videos like this provides a glimmer of hope that maybe, just maybe, there may be a cure soon, and it’s nice to know that you are not alone because that’s how you always feel- like you are the only one with this, so thank you so much. You don’t know how much it means to those of us who have this and long for the day when we will finally be free from the weight of Lymphedema♥️
Thank you for sharing your struggles. You could be an inspirational speaker.
Hearing other's struggles sharing in our human frailties unites us. Another commenter shared they've been doing intermittent fasting. 🤔 Would you share if you've been doing that yet too? 🙏It might be life-giving for you.
I thank you for educating me and the public on this “ condition “
You are so loved and we appreciate your acting so much. Your talent is immeasurable. Please make many more films .
Fabulous talk. I had never heard of this before. Thank you all for raising this issue.
Thank you all for everything you are doing on behalf of LE patients. Thank you for your passion for this. Kathy, I am not an actress by any stretch, but sometimes I feel like one. I have pretended to be “normal” since I developed LE in my left leg in my early 20s. I had been a dancer from age 4, and a cheerleader, etc. My life after LE is lived in pants, using only my brain for my vocation, but the hole in my physical life is forever. Thank you for your advocacy.
I’ve had primary Lymphedema since I was 10 years old. It started in both legs, I got it in one arm a decade ago, and last year in the other arm along with both breasts! I have had manual lymph drainage back in 2000, bandaging in early hours before work, and in evenings everyday along with compression pantyhose. It’s been and continues to be a nightmare but I’ve always been determined, managing to have a career after completing college. My parents and fam have got me through this, but I’m really tired now.......Something must be done, someone must care, so many are suffering silently, no one understands.
I was diagnosed with lymphedema in 2016 by the P. A., I was seeing. My leg was very swollen and all she told me was to buy compression socks for my legs and to keep my legs elevated.
I didn’t feel like she cared at all about was I was going through and I haven’t been back to her office since that day. I still have it worse in my left leg, it is now affecting my right leg.
I am trying to get help, I have NO insurance, divorced and I can’t work full time.
I didn’t have any surgery for cancer.
People need to put an extra 20 pound weight on one leg and try living a regular life.
I know there is therapy but I don’t have health insurance or the money!!!!!!!!
Thank you for this!!! I am not alone!!!
I had an aunt who died a few years ago who had huge legs and ankles . So unusual. Something maybe a 400 lb person might have. She didn't know how to speak up and I lived in another state and honestly though I thought it looked so miserable , I would have never thought to say anything. And I wouldn't have even known what to say as I have never heard of this before. Thank you. I am going to send this to Her children so they are aware. Gail Fleming
Thank you, dear people. I have suffered with this for some years now.
My Mother suffered from this illness God Bless her 🙏
Mine did too :(
Wonderful share Kathy.
Thank you Kathy Bates and LE&RN. I have LE and understand the anger and frustration.
THANK YOU CATHY FOR SHARING YOUR EXPERIENCE WITH ME. I AM A HUGE FAN OF YOURS. THANK YOU FOR THE ENCOURAGING WORDS. I HAVE EDEMA TOO.
.
I had the condition of injuries from a car crash and a pedestrian. The doctor was aware and referred me to a specialist. It saved me a lot of misery and other problems. This is still informative. To see this series.
Please let us know what type of specialist and the progress you're seeing there. All positive experiences are important to document and consider as so many are looking for the method that may work best for them. And so many don't find it.
Kathy, You touched my center, I always admire you, dear! So glad you spoke up; I can imagine you distress! My mom had probable breast cancer and the removal of lymph nodes were more painful than the biopsy of a breast that wasn't removed, debiliating her strength in hands and arms!
Kathy……Thank You…..I never knew…Have both upper legs very swollen…No doctors noticed or cared…
You give me hope….Keep up the good work…I appreciate all of you…..😊
This is amazing!!! Thank you!!!
Just seeing this for the first time and its wonderful to see there is support out there. Just diagnosed a few months ago and had no idea what was happening to me. Lets get out the word!!! Thank you Dr. Rockson, Dr. Repicci, and Kathy Bates!! thank you for being our voice. I will be supporting LE&RN and will be, hopefully soon, making a youtube video about lymphedema following prostate cancer. I'm the only guy going to our local lymphedema physical therapy and I live with millions in the San Francisco Bay Area.
You all are GREAT!!! I LOVE YOU & I WILL FIND HELP FOR MY BROTHER & JOIN YOU, THANK YOU.
THIS INFORMATION IS SO GREAT 👍, I'VE NEVER HEARD SUCH GREAT INFORMATION AND I'M GLAD I TUNED IN YA''LL 💕💜❤️.
Dr Rockson is my cardiologist!
And i feel so privileged given how brilliant he is. I have lymphedema and pulmonary hypertension ( which is in part , a big part, due to my sleep apnea) and he was so patient explaining everything to me regarding my medical concerns.
I was thrilled to see him share his vast knowledge about lymphedema on this CZcams video.
What state is he in?
@@neiceycurl California. He’s at Stanford University Hospital in Palo Alto, Ca. ( think Facebook, Google, etc)
Do you know what caused you to have lymphedema in the first place ? from breast cancer surgery ?
Thank you, this video has moved me beyond belief . Hi there,
I have lived with secondary lymphoedema in my left arm as a cause from breast cancer since 2008. I happened to be left-handed, and my career as a hairdresser and artist have been affected over the years numerous amount of times. I now do seem to have a handle on it but I do find it can make me feel really rather unwell. I need to rest up quite often and begin again.l would love to support Kathy Bates and her team ,if there’s anything I can do here in London to help others with this condition and learn more about lymphoedema myself ,please get in touch.
Thank you Kathy Bates and all of you learning about this
PLEASE PLEASE KEEP STUDYING AND MAKE THIS EVEN MORE PULIC. I KNEW SOME OF WHAT I HAVE BUT THIS REALLY PUT EVERYTHING TOGETHER FOR ME. NOW ALL I NEED IS TO FIND SOMEONE WHO CAN HELP ME
To continue: Over the years since then I’ve had a great deal of medical contact but no one ever told me the swelling was lymphedema until a year ago when I moved and had to change heart doctors. The new doctor came close when, after I asked him about my leg swelling thinking it was heart related, he told me it was lymphedema. That was it. Then when I went to the new general practitioner she immediately gave me a referral for therapy. Since then I have been checking all the You Tube videos relating to lymphedema and they are an unbelievable source of help.
Thank you for bringing understanding of this condition.praying for a cure for those who suffer from it .
Thank you for what your doing. God bless all of us fighting for a cure. Your not alone. I support World Lymphedema day, from Southern California!
I was sincerely moved & relieved while I watched this video…. I battle Fibromyalgia every day & within the past 18 months, I have experienced uncontrollable edema in my legs and feet…I noticed that even with the medication for my swelling ; I was still very swollen (especially around my knees, ankles and tops of my feet).. I asked my dr about lymphedema and she couldn’t give me a straight answer whether I have it or not… yet, I struggle everyday walking in pain… heaviness and pinkish tint on both shins…. “You are just obese”…Noooo it’s sooo much more than that…. Please help me…. Who should I see for a diagnosis of Lymphedema????
Hello
Sorry to hear of your suffering. I believe I had all the symptoms of fibromyalgia. I lost 7 kilos on the keto diet and all symptoms dissapeared including slight ankle and foot swelling . Try it its very good for your health.
go to a naturopath and have your thyroid fully checked and hormones too.
@@dianecleary1054 Yes indeed! I was just going to encourage her to use that lifestyle change as well! With so many doctors and people sharing testimonies and how to on CZcams, social media and in books, this is definitely being overlooked. I have diagnosis is as well and one of them being potentially a genetic condition of hypermobility and laxity. Two different medical professionals immediately recognize that I might have Ehlers-Danlos Syndrome, But now with it being recognized globally and in perhaps the dozen different types, The few specialists that are around either or not taking any more patients for a while (200+ backlogged) or have a 12 to 18 month wait. Our medical system is so broken because it focuses on sick care and feeding big Pharma pockets. Because of my sensitivities to synthetic drugs/ medications, now for over a decade I had to find other alternatives for dealing with pain. It led me to realize that our Creator put everything we needed in the world knowing what would be happening. And in His great love for us, All of His creation symbiotically is meant to work together including our cells, plants, nature, etc. We humans think we know better and need things up. We all need to demand better of our Legislature and Medical decision-makers while continuing to be truth proclaimers unabashedly. It's heartbreaking seeing so many suffering with cancer and blindly following the oncologists' recommendation.... which always leads to other issues (secondary LE or death). Young women in medical careers are losing their loved ones without knowing the medical training is lacking. We who have more history and ConnectingTheDots abilities should help to further their education and push back encouraging them to The Truth About Cancer or Anti-cancer Society Of America. Sorry, I got on my soapbox. Best of wishes and continued blessings to you!
Thank you for confirming for me that lymphedema entails physical PAIN. We are all taught not to complain, but I suspect if others knew the physical pain lymphedema sufferers endure, they would probably be more compassionate and less judgy.
My breast cancer journey sounds almost identical to Kathy Bates; though she had more lymph nodes removed than I did. I had been told about lymphedema, but it was told in such a way as to minimize the odds of getting it (“20-30%”), and its consequences.
After recovering from my bi-lateral mastectomies, I joined a breast cancer support group and I was appalled at the number of breast cancer survivors in the group who had never even heard the word lymphedema! 😲. It was difficult for me to fathom that no one had talked to them about it that I decided that, surely, they MUST have been told but were so freaked out by their diagnosis that they just didn’t “hear” it. But, nope…they really had no idea. I had a wonderful doctor of physical therapy who took time out of her personal life to come to the group and give a presentation. (Bless you, Dr. Lori!)
When I went to talk to a radiologist about whether I needed radiation treatment t after my bi-lateral mastectomies, she gave me good news and bad news. The good was I didn’t need radiation (Yay!); the bad was I had lymphedema. She showed me how she could tell by showing me my swollen left wrist, where upon I laughed and told her, “Oh, no! I’m just fat!” (Unfortunately, that’s true!) I came to understand that though my lymphedema was manifesting in my left arm, the condition in itself is systemic…meaning throughout the whole lymphatic system in the body. She told me all the things I must avoid: hot tubs, hot showers, scratches from pets or working in the garden (wear long gloves!”), infections from wounds, no blood pressure taken on left arm, no shots given in left arm, watch my weight, and, worst of all for me because I have a chronic pain condition, no massages! Plus, I was e pe Ted to do a special massage designed for the lymphatic system twice a day…and it takes a good 20+ minutes to do! That’s roughly 40+ minutes a day doing the massage! Which, btw, I don’t do! (My bad.)
I hate that I have it, but, I am glad to be considered a breast cancer survivor, and not a casualty. Let’s hope more doctors start to understand the nature of lymphedema and the challenges those of us with this disease must face every day. Thank you to Kathy and the others who are working hard to make that happen.
Woah! No injections in the swollen arm? That explains why my last Covid shot hurt like HELL! I was in pain for weeks! I have two pets who scratch me often and nothing was mentioned to me about this. Can you provide more details on why this is an issue? FYI, lymphatic massage is very different from going to the local massage therapist. It's a very gentle manipulation of the tissues to encourage lymph drainage.
I have been just diagnosed with lymph edema in my legs are the right leg is larger than the left leg and I am seeing a specialist that does nothing but help people with lymphedema in the city of Fullerton California so I’m so glad that I found you on CZcams and I so I can continue to listen to you another doctors thank you.
I have exactly the same issue. My cardiologist has me doing the compression boots on both legs for 3 hours a day and I take fourismide. In the past few months I have noticed more swelling and of course it is very limiting. Just getting old is not fun
I have Generalized Symmetrical Lymphedema, Stage II which means I have it throughout my entire lymph system. I have because of a botched C-Section that sliced through too many nodes that did not heal so my entire body gave up. I have been learning to mitigate it for 5 years...every day, every week is a struggle. But I learn new things all the time...and have small successes...sometimes big but mostly small.
Kathy speaks truth to power.
At last, my condition, my disease has a name. I am not alone. Been really angry at a GP who was good with everything else but on this disease he said he didn't know what to say let alone what to do. Lymphedema has ruined my life and cost me a fortune looking for alternative treatments, medicines and compresson garments. Watching this opened my eyes. I will take control of my well-being. Thank you all for sharing & educating me.
I have had lymphedema in both of my legs and it started 3 or 4 years ago due to a procedure done through my groin for my heart. My doctor tells me I'm overweight and if I lose weight it will go away. Thank you so much especially to Kathy Bates. I'm so desperate to be able to live normally again. It does feel like my legs are in cement. No one understands. Could you please recommend a doctor in Indianapolis Indiana please.
I had a double knee replacement in June of 2011. I had scheduled myself to recover at a rehab center. Initially I was fine, walking on the first day. Unfortunately, I pushed the envelope as I am inclined to do, and my legs stared to swell.
The initial reaction from the doctor's was that I need to keep my legs elevated and they pumped me full of furosemide. Yet, when I was finally discharged, my legs were still swollen. It delayed my healing since the legs would swell and keep the stitches from closing. Worse was that until they were able to regulate my heart because the swelling was compressing the flow of blood, I would walk ten paces and faint. A My doctor's told me stay home, elevate your legs and it gets better. Once I finally healed, the scars that are left, are approximately 1" wide and the skin is paper thin.
I did this for years, gaining a ton of weight. Doctors researched to see if maybe if it was a reaction to the knee implants. They had my leg circulation measured and I was told that there was too much fluid to accurately measure my blood flow.
My primary physician tried to help me. He told me of the compression hose and had them ordered for me, he tried to get medicare to provide a machine that helps with the edema. Unfortunately, unless your skin is broken, medicare will not provide the compression machine.
I struggle every day to be what my mind thinks I can be. I am not sure if the years of living with Lymphedema has contributed to certain organ deterioration or if it is a side effect of the medication I take for the pain and swelling.
Since then, do to the swelling, I had to have my left knee repaired and I was told that I needed to have the right one done as well. I was also told, that the next correction would require replacing the implants with new ones. I decided against any more surgery, since the swelling scares me more.
I do know that pain doesn't kill you, but it can sure slow you down.
I am more use to it now. But until this webinar, I never knew there was a way to help me. Thank you for your webinar. I support Lymphedema day!
Took me 2 years of research on my own to determine I had Lipedema. I was told all my life that I was fat. my research told me that this developed as I grew up and in 2019 my legs blew up like balloons. Its so frustrating even now I just asked my doctor to send me for drainage massage therapy and with the help of the therapist received a compression pump machine through Medicare.