Help in the USA

I've been a part f this site for a few months now....n has only seen a few people from the states on here.......I live in the New York metro area.....I would love to know what kind of help and aso support groups that r around......I have lymphedema in my left leg....due to cervical cancer......looking forward to hearing from u guys.......

Thanks....

Annette : )

18 Replies

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  • Did you find this US site yet? lymphedemapeople.com/ There are many thousands of lymphoedema patients on the public Forums on the site - check them out - you may need to make a large pot of coffee as it could take some time!

    There is also the National Lymphedema Network - lymphnet.org/patients - another brilliant source of help on your side of the Atlantic. There are two support groups listed for New York city as well as NY state. lymphnet.org/sites/custom-s...

    (I lived in Northern Virginia in the early 90's - happy days - now permanently home in Bonnie Scotland!)

  • Lynora, thank u so much......for the infor......I will check out these sites....

  • You could also try this site - clt-lana.org/search/therapi... - to find a local lymphedema therapist who would be able to give advice about self-management, treatment, compression options etc etc

  • Lymphaticresearch.org is organising a Walk on the Brooklyn Bridge today.... To raise awareness, collect money. many lymphies will be there and some talks ,... Tooo.

    I dont live in US but if i did, i would attend...

    x

  • /kharimata....

    Thanks for the information.....I would love to attend the walk...but it's hard for me to get around.......I'm also a single mom of 2boys n one is Down syndrome .....n he doesn't walk 100% in dependently...but I'm gonna look into the org.....thanks again

  • Oh, I understand... But anyway, since they Walk in New York, they must be 'active' in that area so you must find fellow lymphies,... in that organisation... You can contact them and ask for support groups? Or place a message on there site, Facebook? Take care !

  • Hi Annette

    I am Mikki from Florida. I, too, have lymphedema in my right leg, due to radiation therapy following cervical cancer surgery. It appears that there are more treatment options in the UK. I certainly haven't found a lymphedema nurse here in my area. While there ar lymphedema clinics, they are not covered by insurance to my knowledge. I was receiving physical therapy, but that comes with a $35.00 copay per visit which can be costly. I would suggest that you contact your insurance plan to determine coverage asd ask your oncologist or primary care physician about treatment options. I've also checked surgical treatments but neither is considered a cure and, again, they can be very costly. One is a form of transplant of lymph nodes from the abdominal area. The other consists of bypassing the lymphatic system using the venous system, but that could break down the venous system and make matters worse. I've had lymphedema for 7 years. How long have you had lymphedema? Please let me know if you find any useful information. Right now I've found a seamstress that makes beautiful slacks. The legs are just wide enough that you can't see that my right leg is bigger than my left, yet the top part is small enough to fit my lower trunk. I'm a size 6 in the trunk and my right leg is a size 8. Also I use JUZO compression stockings 40 compression, thigh high. Thy are easier to put on than JOBST. I hope this information is helpful. If you would like to share information outside this website, let me know and I will give you my email address. God bless!

  • Hey, if you want more info about a lymph node transfer please check this blog: lymphnodetransplant.wordpre...

    It is not considered as a cure yet, but there are more things in the pipeline like Lymfactin and Biobridge to combine with this surgery in the very near future and this all looks very promising!! For me it will not be a solution immediately, since I am a primary lymphie and I am afraid to take nodes from another region...

  • Biker chic......I wish I could get into a size 8..... I was a size 8 b4 the lymph...but now my left eg is about 19lbs heavier than my right....I massage my leg daily n wear the wraps when I'm home n the stocking when I go out..,...I'm so self concision with my leg.....I've been wearing sweat pants since I develop lymphedema .......I would love to talk to u .....via email......I feel so alone and no one understands what I'm going thru....I'm going to get out these sites that they recommend .....take care n ttyl

  • Really don't despair! There will be a solution soon, please check my post 'Hope'!!! For the first time a cure is not so far away anymore! I am very positive that we will experience this in our lifetime. So hang on!

  • I really don't mean to be ungrateful ......,but some days are harder to get though ....but I'm hopeful also......I willmkeep praying......

  • Hi Dojo2927 i iknow exactly how you feel xxxx I posted my first post on this forum only

    recently i felt at my lowest point constantly in tears unable to cope. It tough trying to juggle your life whilst coping with lympheodema, I have it in my right leg and grion

    after surgery for cervical cancer and removal of 38 lyphnodes.Thank god i found this forum i had so many lovely replys good advice and best of all i realised im not alone

    anymore. I finally felt ready with all this support to be honest with friends and family

    about how i was really feeling. I visited my doctor im now on antidepressents theres

    no shame if you need a hand emotionly im also sorting some counciling. Please

    reach out to friends family and all your new lymphie friends we can all support

    eachother.Im so pleased you have fellow Americans on here if you ever need a chat

    you can contact me alisonlmartin@hotmail.com.

    YOUR NOT ALONE ANYMORE !!!!!! XX

  • Biker chic......I wish I could get into a size 8..... I was a size 8 b4 the lymph...but now my left eg is about 19lbs heavier than my right....I massage my leg daily n wear the wraps when I'm home n the stocking when I go out..,...I'm so self concision with my leg.....I've been wearing sweat pants since I develop lymphedema .......I would love to talk to u .....via email......I feel so alone and no one understands what I'm going thru....I'm going to get out these sites that they recommend .....take care n ttyl

  • I live here in Miami and there is only one place called "Suncare Therapy'" that does wrapping and the boots and they do come to the house and insurance covers it. Many places do the Leg massages but not very well this is really an overlooked disease and not many Dr's do not deal with it like the UK. They are more into giving a water pill and nothing else.

  • Goodtimes ....thank u for the infor.........I live in the New York metropolitan area......I wish I could fine a place like the one u mention.....but I most surely will look into....that's funny u mention water pills.....my doctor told me to try Motrin ....for the swelling.......lol

  • You can get the Lympha-Press compression therapy pumps and garments in the US, visit their website: lympha-press.com It is excellent in managing lymphoedema and can help reduce limb size. NNE

  • My friend and I are in Connecticut. He has Primary Lymphodema so it's part of his makeup. I have found this to be the best site. Lots of good info and tips!

    Xylyne

  • I have to agree .......I love this site

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