Living with Lymphedema and Lipedema

[@julieannerady272]

I'm in shock. Complete shock. I have been seeing doctor after doctor after doctor looking for answers as to how and why I gained nearly 100lbs in one year inexplicably . Why my knees ankles and feet are always in pain. Why my legs look "swollen" all the time. Why I can barely bend my knees or find pants that fit my strange leg shape. Why my insanely strict raw diet has made no improvements in my weight whatsoever. This single video has brought me so much hope.

[@brandonrodriguez4003]

You should do blood work not all the time is Lipedema i heard kidneys makes your feet and ankles to swell too always drink lots of water too our body needs a gallon a day keep away from junk foods they will do a lot of harm as you get older take good care of your body with good healthy foods if your young start today because is no joke go to the gym don't be lazy do it for yourself good luck everyone

[@teresaspaulding9264]

Glad to see that Lipedema is getting noticed. It is painful and insurance needs to cover this. Drs need to be updated, I am sure it is more that 11% of women with this issue.

[@danafrostmeeker7821]

I'm stage 3 lymphedema and I'm miserable id give anything if a Dr would donate me the surgery I desperately need for my legs..I have survived cancer now also have to deal with lymphedema in my legs, its so painful 😫

[@jude1515]

I like that these doctors were sensitive to this ladies issue.

[@claudiaadams8992]

I have the same problem and she is on point with everything she said. My son was also born with it as well. Healthcare has been so prejudice towards us. For him it has been the absolute most traumatic experience.

[@khuloodkasti9659]

Would you please write down for me the name of the professor she is going to meet and where is he? I'm not from the States ....Thank you

[@monikawangai8719]

I'm glad i came across this, coz I never understood how I could be skinny from my waist up and have bigger thighs than someone twice my size, but in Africa these are things u don't talk about otherwise society will think you are crazy

[@Lippymama]

I would love to see Lipedema talked about again. The more awareness the better!

[@whateverman2674]

omg i dont have lymphedema or lipedema but my heart goes out to those who do have it.

[@Catfluff521]

I have lymphedema due to breast cancer/lymph node removal; had my life threatened by cellulitis. I was failed by my oncologists who did nothing to prevent it, which is possible. They also never told me about lymph node surgery and instead only sent me to PT once the condition developed. I had to use internet to find a doctor on my own to treat me surgically. Disgraceful that my oncologist knew nothing about surgery and did nothing at the time of my lymph node removal to try and prevent this deadly/incurable disease. And I got my cancer treatment at a large hospital partnered with Sloan Kettering and was still failed.

[@echastee]

I love that she's in school because she wants to fight this. Bless her. I wish I could help others like me.

[@khuloodkasti9659]

Would you please write down for me the name of the professor she is going to meet and where is he? I'm not from the States ....Thank you

[@lanedramanning3733]

I am glad to now be diagnosed correctly because I have been trying to find someone to help me get this process complete and get even healthier

[@dirkevans1]

I have Lymphedema. I am being treated with compression and elevation. I feel I was ignored and untreated/mistreated for about 40 years, probably more. I was treated as if I were just a fat person. In my younger years I was very physically active, but as the weight gain took over I became depressed and defeated. I did aggressive weight loss many times. And I would lose, but it was difficult. The edema was still there in the lower half of my body. Insurances don't want to pay for the treatment and surgeries that would really help. Removal of swollen tissues in legs, hips, glutes and abdomen would provide comfort, lessening of pain and ease of movement. The pain is extreme. I have been on some major pain meds for about 8 or 9 years. I feel I am past the point in my life where anyone really cares if I get quality and appropriate care. Or if I can just get rid of all of this swollen tissue so I can look and feel normal.

[@danafrostmeeker7821]

I understand me too

[@danafrostmeeker7821]

I am in stage 3 lymphedema/lipedema

[@jwilliams6055]

I have lipedema. I have lost from near 400 lbs to now 255 and it helps but the lipedema fat is not lost so now that diseased fat is weighing on my nerves causing severe pain at night, CBD oil is extremely helpful. I’m fortunate not to have lymphedema but everything makes sense now

[@Cocoapuff1980]

A lot of people with lipedema loose fat with the keto diet. Have you tried that? Check out Leslyn Keith and Mende Staggs.

[@MetalMama-zb4wg]

J Williams, My grandmother had lymphedema. Before she passed, her legs just ozzed fluid. My mother also had it all her life. She passed of lymphoma cancer. I was just diagnosed with lymphedema and I also have Multiple Sclerosis. I pray my daughter doesn't get this awful disease, but it seems to be hereditary.

[@ajkb1988]

Ive struggled with lipoedema and lymphedema my whole life. Doctors in my area have been telling me for the last 15 years its gotten worse they say that oh you're just fat and lazy. I've got a new doctor and im saving a bunch of the clips and im going to be like do you see see its a real disease im not making up an excuse for my fat.

[@jw8453]

I live in Sacramento , Ca, and I can’t find a Dr who treats lipedema, the Drs I’ve seen won’t diagnose my condition as lipadema because they say they don’t know enough to really say what it is!! I don’t know what else to do!!

[@scorpio663]

Ya I live in Sacramento and have Kaiser . All they do is maybe order compression garments and that's it . Everything else is out of pocket . Ridiculous. Guess we have to suffer . 😢

[@Violet3737]

Thank you Sarah for speaking out and helping people become aware and hopefully become educated as well.

[@suzkilliantanupo2055]

please contact me [e-mail].

[@memoriea]

Just diagnosed with lipedema by the TSA....so mad a all the doctors that missed it....but at least I am getting help now...but too late to save me from bariatric surgery and anorexia...

[@taraoakes6674]

Wendy Taylor Yes! The dense, fibrous nature of lipedemic fat lights up like a Christmas tree in those TSA scans. It’s atrocious that TSA agents are more aware of it than most doctors. BTW, June is Lipedema Awareness Month,

[@kimberlymedina3881]

where did you find a doc

[@angiel3114]

Me over here very skinny, but my thighs are ridiculously big. 😔 I hate Lipedema💔

[@AhKidd]

I have had this going on 4 years now.. I just turned 50 and I am so tired of being this way. Every day is a struggle to just get dressed and find shoes if that's even possible.. I have it in my left leg ...now my right leg is starting to show signs of the same shape as the left. I have been active about it NOW I am pissed... Why did I get stuck with this.. It's really hard to feel good about yourself with this condition...I find it very difficult to be intimate with my husband because of the way I look. I looked deformed and disgusting..

[@danafrostmeeker7821]

I feel same way I've had lymphedema and lipedema for 10 years or more was only diagnosed 2 years ago i wish I could afford surgery 😢 😔

[@anndonald9722]

OMG, that young lady is completely right. I am a 50 year old that has been suffering from a large body/obesity that started at a very early age. I am still having issues to this day to get diagnosed with Lipedema. I was diagnosed with lymphedema a few years ago, but unknown reasons (I due according to all the research I have been doing over the years) and in no specific main area. I am swollen head to toe, starting to become bed bound due to it hurts to move or stand or walk for any length of time. I am starting to develop pimple like bumps on my legs and head the when popped clear liquid comes out along with yes a little blood. I am desperate to loose this weight of approximately 220 lbs of excess weight, so I can live a long healthy life. HELP

[@debbeattie605]

Knowledge is power. Thank you for bringing this issue to light.

[@thisthatandthose]

What a blessing for her! Way 2 make a blessing out of your trial. going after your masters in health law. We need people 2 fight insurance Co. Wtg! you are a beautiful lady.Your smile reminds me of my sister Jan. We just lost her. And I am so sad. Bc I didnt know how 2 help. I think my gma died from CHF from all the fluid and cancers she fought. And diabetes. And now i have both lymphedema and lipodema and possibly others from it. And A.S. also. I wish you the best my skinny soul sister!! Its not just fat!

[@maremaid15]

I’ve spent 12 years since menopause trying to get help and I’m trying to get surgery for lymphedema. All doctors told me just go on a diet I diet and many times in my life. I got rid of the some of the regular adipose tissue but it does not affect the lipidemia fat at a prostitution. Plus, lipidemia is a connective tissue disorder. Doctors really need to be educated because they are really harming women by being abusive and telling them just to eat less.

[@Cheznrice]

I lived with my entire life. It's the hardest thing I've ever dealt with. It's painful, uncomfortable and impossible to live a normal life.

[@echastee]

0:11 I'm sorry we're all sorry "rolls eyes" did anyone else notice that?

[@celticoceane]

I have lipedema and doctors told me for years I was just fat go lose weight mine first started when I was 10 I'm in constant pain and it's now chronic I am 54 now and still not got any help for it

[@adveekadedgay520]

Hope that some doctors in India can help me with my lipedema. I know my weight has increased tried all to loose weight but in vein. I even after excercise why I can't loose fat around my arms, hips, thighs and calf. After seeing this video got the answer. Thanks @thedrs for the insight to my condition

[@danafrostmeeker7821]

Yes and all insurance including Medicare, medicaid should cover all treatment including surgery and bandage s its hard enough living with lymphedema

[@brandonrodriguez4003]

My mom has it for a long time from the time when she gave birth with me i am 26 years now and my mom 66 but she keeps going on strong 💪

[@lhale9176]

Has to be hormonal ..got mine after hysterectomy...😢

[@GwenMotoGirl]

Here we are a decade later and nothing has changed with insurance coverage.

[@spencerstoddard2295]

I love that she was so grateful for $3,000 for compression stockings!! They are SO expensive, especially custom made ones, so to be honest this will cover like 10 pairs! The other gifts were funny though bc I’m sure she’s had a consultation with surgeons a before and they tell her that she needs so much money...and she asks her insurance and they tell her that liposuction is a cosmetic surgery so it’s not needed....drum rollllll.... that’s why she’s going into Health Law!!! I hope she’s already graduated by now and working on the flawed system!!! I have Lipedema and it has progressed slower than hers (so far) but it still super stinks!!! I always look at the videos of women with Lipedema that are stage 1 or 2 and hurry to get the surgery and I think, man Is love to have your before surgery Lipedema legs haha... Thanks to this woman, other women down the line won’t have to struggle to fight for insurance help to help cover surgeries.

[@lhale9176]

If we could get diagnosed faster...I went to Mayo clinic yrs ago...they didn't know that's what it was...but I have a list of other autoimmune diseases...caused by pesticide exposure. It's all too complicated 😢

[@lisatelly2418]

How is 11 percent of women having it considered common??? That would make it rare right?

[@sunnydaysatl]

I’m so mad I had it for years going to doctor n they could not tell me why my left leg was getting so big. Finally I know what’s wrong but I’m in late stage

[@jb-wm5uc]

Is there no help for late stage?

[@acionnaanassa4042]

Were these US doctors or UK? I’m just curious

[@danafrostmeeker7821]

Me too im stage 3 or 4

[@danafrostmeeker7821]

Can we be helped in stage 3 or 4

[@sunnydaysatl]

@@acionnaanassa4042 US doctors

[@DianaBurrellShipton]

Not a fun thing to have for sure :(

[@Butterfly-444]

YES YES YES!!! Thank you Sara! Me too!!! 💕 keep fighting the good fight! 💪🏻 @Lipedemasociety

[@scorpio663]

I have both . At first 2-3 Dr.'s told me that my ankles were just swollen because I was fat or considered obsesse. My BMI was 33-38 . That's all they said was I was fat. Now 10 years later I almost died due to infection in my leg caused me to be seriously ill in which they now say it is stage 4 lymphedema . Insurance doesn't cover much it's all out of pocket . Wish they would help us with this problem. 😏😒

[@schawnettarobinson8584]

Sarah is a superstar!!!

[@ΚουβουσηΜαρινα]

I was refused to see a doctor with all my "insurance " from Mayo clinic in Jacksonville Florida I just wanted to see somebody which now more than me

[@danafrostmeeker7821]

Why were you refused just asking because I'm looking for myself

[@melaniemcqueen1339]

I'd never in my life afford lyposuctjon ...I was always skinny and then I stuck five kg in ten days and then it went up from there never down...tried heaps of diets I'm up four pant sizes in eight years..and I can't see any calf what so ever now and extremely sore to touch anywhere......I wish i could chat to these doctors and come from nz

[@Cocoapuff1980]

There’s other ways to treat Lipedema. Keto and intermittent fasting is really effective to loose lipedema fat. Google Leslyn Keith, Mende Staggs. I hope this can help you 😊

[@melaniemcqueen1339]

@@Cocoapuff1980 I've done that ...nope ..I'd have to have a winning lotto ticket for lypo

[@tuatavila4647]

Woah im thankful for this video. Im about 600lbs heavy but im still moving. It just my thighs got so big it slows me down. Every doctor i went to said i need to loose weight. Workout is very hard so i just go to work. How do i know which one do i have?

[@halfirishgirl2]

Could someone please caption or subtitle for me. I am deaf and I like to understand what's was saying on this video.

[@kevitamaster-brewkombucha5472]

Mary Stocklin Click the 3 buttons on top and go to the cc button where you can read captions

[@muchlove9781]

Gps Gps no cc 😔

[@muchlove9781]

Mary Stocklin host: Sarah is here and Sarah first of all (aplauses) thank you for sharing I’m sorry that not only you are dealing with this condition but not knowing what you are dealing with that you had a delayed diagnosis i can only imagine what you went through there. What do you want ppl to understand about your condition? Sarah: what I want ppl to understand the most about lipedema and lymphedema specially lipedema is that that’s what causes the excess weight. My obesity isn’t from poor lifestyle it’s from a medical condition that I was born with. But even despite that, even if my obesity was from my lifestyle that doesn’t mean ppl affected by obesity shouldn’t be given dignity and care and respect, it shouldn’t impact the healthcare we receive and it shouln’t impact how we work (aplauses). Host: it does make sense because during the rest we mentioned the risk of infections. I’ve seen some real bad infections from lipeda in the emergency department that can be life treathening but we haven’t talk a lot about these two. Host 2: we really haven’t and you know the first issue with lipedema you know your body is just genetically programmed to retain, to form excess fat in certain areas particulary in the extremedies the arms and legs and it can affect up to 11% of women Host 3: so it’s pretty common Host 2: those women who get it it’s not related to poor diet and lack of exercise but it’s a result of this body programmed Sarah: they say it’s rare, it’s not very rare it’s just undiagnosed and it’s easely recognize if a doctor lnows what it looks like. Host 2: even among plastic surgeons who treat this condition only now we are learning more about it and what’s the best way to treat it. Lipedema often goes hand to hand ( as it does in your case Sarah) with lymphedema and what that is? It’s the problem with the lymphatic system the valves are just not properly draining the fluids specially from the lower extremedies from the legs and this is treated in a diferent way. You lnow they can do things now with a grafting lymphs nodes and things like that to sort of jump start the lymphatic system Host 1: but it doesn’t even take a doctor if I look at Sarah what other ppl may see as excess weight in your arms and legs I think we all can see that it looks a little diferent than if someone is just overweight and you cannot always tell at first glamce but its one of those things if you are at home and you are suffering and it doesn’t make sense why you have all this excess weight in your arms in your legs and it doesn’t really match up to maybe your hands and other parts of your body it just may be one of these conditions and if you happen to be with a healthcare provider you should say something about it and raise the red flag here because there are doctors that haven’t seen this at all. Sarah: that’s the thing. It’s been 10 years since I’ve been living with this and I have always wanted to speak out about it and you know as the therapist says there are days worse than others and it’s just a struggle i’d like to tell ppl to take a walk in my shoes if you can get these shoes on because that’s not an easy thing to do. But I had two choices: I could either get angry about it or I could be active about it and by getting active I’m not only helping myself. I mean insurance battle is huge i’m actually working on my Masters in health fighting because of everything i’ve learned through insurance ( aplauses) Host 4: I wouldn’t even do that I mean you’ve just inspire me and women everywhere Host 2: the awareness that you are creating is awesome and what I want to do for you is that I want to end up by saying I spoke to Dr. Jay Grant Zale plastic Surgeon, professor in UCLA expert in lymphedema and lipedema he has agree to see you in consultation and discuss what are the options available for you Sarah: thank you. (Aplauses) Host 1: in the meantime Sarah by Contour Md they heard your story they want to help out they are going to give you over 3000 dollars in garments to help improve your condition ( aplauses) also lympha Press wanted you to have a lympho pack treatment system to help you treat your entire lower body and reduce some fluids you have on your legs and other areas and in the meantime you can ise those products and we hope that your consultation will be meaningful thank you. ( aplauses).

[@tiffany7985]

@@muchlove9781 You're very kind to transcribe it, but honestly, this show is on a big network and meant to be kind of a PSA about health; you would think they would be sensitive to accessibility issues...

[@meganschiller7580]

Poor thing... anyone can tell this is not obesity.🤗

[@stefanytorres3519]

Seven years ago!

[@parkerohio6424]

She absolutely had lipedema but she also is overweight. Losing 50-100 would definitely help her condition. To say all her extra weight is due to lipadema is a joke.

[@lmt6672]

You cannot lose weight when you have lipedema..

[@jwilliams6055]

Parker Ohio I agree, you can lose the regular extra fat your body has, it is more difficult with lymphedema though because the fluid is constantly swelling and weighing you down

[@gigibelle7465]

@@lmt6672 so not true. I have it as well and I lost 15 kilos last year after being given the diagnosis. Yes, it is harder for you to lose weight, but that does not mean it is impossible. Changing your lifestyle, healthy eating and exercise definitely make a difference. Now, when it comes to the occasional swellings and fluids - sure, that is something you cannot change by losing weight, but then again - exercising and nutrition also can help with these problems.

[@acionnaanassa4042]

When this fluid is drained, it has a completely different consistency from adipose tissue. Please research before you comment.

[@julieannerady272]

I'm speaking from personal experience here and I think you are misjudging things. I eat an almost entirely raw vegan diet. I'm up at 4:30am every day and don't stop moving until at least 7:30pm each evening. I'm in constant pain. I continue to gain "weight". I am 5'7" and up until a year ago weighed somewhere between 150-160lbs. Suddenly last summer my Jean's no longer fit. Not in the waist but in my knees thighs and ankles. It got so bad that I couldn't find pants to fit my log shaped legs. Stairs are painfully difficult but I have to do many of them each day. I eat cleaner then anyone I know and continue to remain active but also continue to grow in size and weight. The point of this video was to highlight the challenges that this conditions comes with. With the #1 challenge/symptom being difficult losing weight it seems quite absurd for you to "recommend" doing the one thing that is proven to be most difficult, and basically a diagnosing factor for the disease.

[@maryanncarrlton6878]

Thank you

[@carolecoffman4276]

Just diagnosed with lipedema in my left leg especially…

[@brendalockett7982]

Where can I go in Atlanta, GA?

[@shinebabyshine.]

that website will direct you to most lymph specialists in GA

[@skyeblue5669]

L My Lymphedema legs are turning red? Anyone know why..

[@chiniskisnapoles5753]

I use to have this problem in my legs and arms. But I try the Keto diet and for the first time in my life I can wear shorts again and short sleaves shirts.

[@jescaanatory6121]

Am sure it was not this problem.. This isbt a joke

[@memoriea]

Yep won't go away with diet...lost 115 pounds legs still the same...rest of the body looking a little too thin....but can't stop dieting...thank you bariatric surgery ...no this is not "a little problem with my legs" my legs hurt, get painful celuitus infections, and bruise at the slightest touch...

[@taraoakes6674]

Keto will only help with non-lipedemic fat. The really stuff can only be removed with proper lymphatic sparing liposuction. The doctor must be knowledgeable and well trained to do this. But, no, Keto doesn’t not budge real lipedema.

[@acionnaanassa4042]

Keto can help with the runaway inflammation but if your problem was solved with diet it probably wasn’t this condition.

[@dylaneckstein2366]

Still too T H I N N for me tbh famallama