Lymphedema shoe guide

Warm, comfy UGG-style boots.
This is what I have on shoes. Not much, but here goes. You are so welcome to leave any input you may have on this, for all readers to benefit from. Thanks.

I don't buy shoes very often but when I do I now buy two pairs, one size for the good foot and one for the bad. I sell the odd sized partners on eBay, you can do that too. If you want you can see the ones I am selling right here.

Consider buying real leather shoes and have a shoemaker make the one bigger/wider (by stretching the leather). Apparently they can make them as much as two sizes bigger/wider!

For winter UGG-style boots are really comfy. I have only tried some cheap+cheerful replicas but they did the job which was being warm and comfy in the midst of winter and the fact that I could actually get my foot into them was a hit. No support what so ever though. Perhaps there is in the real ones. You can find cheap UGG-style boots at eBay, see this post.

These shops sell individually fitted boots and shoes for wide calfs:
I guess one could buy a pair fitted for the Lymphedemaleg and have the other one altered at a shoemaker. They are quite pricy though, but an investment that could last for many years.
www.duoboots.com  – international shipping.
www.thebootmakers.com – international shipping.

Some shops I have come across with wide fit footwear
www.lovethoseshoes.com  –  int. shipping
www.evans.co.uk  –  int. shipping – can choose to view "wide" or "extra wide" footwear
www.next.co.uk  –  int. delivery – wide fit
www.arcopedicoshoes.com  –  US only
www.marisota.co.uk/shop/nav/show.action?LpgUid=11096614  – UK, not sure about int. shipping
www.dbshoes.co.uk
www.shoetailor.com/shop/home – has EEEEEE width footwear!
www.hushpuppies.com/UK/en/Women-s-WideFitting
www.zappos.com/wide-shoes
www.widefitshoes.co.uk

Perhaps it is also worth checking out shops for seniors.


Brands with generally some wider fit shoes, boots, sandals:
Birkenstock
El Naturalista
Repetto
Rieker
Clarks
Wonders
Camper
Fly London
Art (www.spartoo.eu/Art-b105-women-shoes.php#rst)
Asolo (www.sierratradingpost.com/)
NewBalance has a line called Extra Wide Width Shoes


Update, August 2012: The following shoes have been reported to be good by a Lymphedema sufferer:

An Earth shoe at www.zappos.com/kalso-earth. The name of it is Innovate Too.
Clark UN.KNOT.
Dress shoe called Savonna, it's by Joseph Seibel.
Rockport mesh and Nu-buck.

49 comments:

  1. Wow! I'm so glad that I found your blog. I am a 28 year old woman who has suffered from Primary Lymphedema since I was 23, though I wasn't properly diagnosed until I was 26. I wen to many Dr's straight out of college and tried to figure out what was wrong where I got NO answers. I then lost my insurance through my mom and just suffered for the next 3 years. My lymphedema just got worse because I didn't know what was wrong so I just lived with it! I finally self diagnosed my self and when I got medical insurance again through my husband at 26 I was able to get proper treatment. It has been a struggle because so many don't understand what it's like to walk into a shoe store and just become depressed. Just wanted to say thanks for your blog. It's so encouraging to people like me :-) THANKS!

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    1. I found a great pair of adjustable shoes this spring! Look for
      Kalso Earth Shoe Innovate Too
      I like the negative heel on Earth Shoes because they help my back feel better as soon as I put them on.
      These come in a light sand color and a medium brown. I had to buy a half size larger than my usual size because a swollen ankle pushes your toes forward in your shoes. For my smaller foot I insert any orthotics and insoles that make it fit. I have found that in these shoes cutting a shoelace and tying it across the very top holes help to keep them on. I figure I can wear them in the winter too by wearing heavy socks under them.

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    2. Hi Anne.
      Thanks for the tip, I checked them out and they look really comfy! And cool in Summer! Great idea with a lace as they look very open at the top!
      Liz

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  2. Hello Malaika,
    thank you for your kind words, they are much appriciated.
    I am impressed that you have selfdiagnosed yourself and it is so good to hear that you now get proper treatment. Too many never get diagnose or treatment at all.
    Yes, shopping is not what it used to be, quite depressing, as you say. I find that webshopping is better for me now, better chance of finding something. Please keep commenting ;-)
    Warm regards,
    E

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  3. Hi! I just found this blog and it is as if someone has been reading my mind regarding all the day to day issues with lymphedema. Shopping for shoes, the dresses to cover up and just any small detail that anyone who does not have this condition would not even think of. So I am 27 years old and I was born with this condition, diagnosed when I was 8 and basically have learned to live with it all my life. I studied medicine and am now a physician so I have learned alot about the condition on my own. Ironically, I have never really thought of talking about this to anyone. I learned to live with it, but its really nice to know that I am not the only one. Thanks for the blog and great advice!

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    1. Hi there, thanks for writing :-)
      It is wonderful that you have somehow learnt to live with it as this is something most of us struggle with. Perhaps because you were born with it - children are more carefree and not aware of the issues that adults complicate each others lives with, isn't it?
      It is cool that you are a physician and thereby have been able to learn about the condition from a professional source. What an advantage to have, and how lucky a lympher would be to see you, if you see patients.
      Thanks for reading my blog, and for commenting :-)
      Liz

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    2. Just found this blog,trying to find shoes that fit,thought I was alone but have had lymphedema since birth am now 50 years.I have learned to live with this condition,but it so depressing not finding shoes,even the wide widths does not fit.

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    3. Hi Anonymous#2 :-)
      Welcome to my blog! You are so far from being alone, there are many of us out here. Some say 2.5 million!
      It is uplifting to hear that you have learned to live with it. I am getting better at it but it sure is a long and winding road. Yes, shoes are a nightmare! I buy shoes in two different sizes but still need to look for wide shoes and constantly be on the lookout for something that might fit.
      Thanks for reading my blog and thanks for writing :-)

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  4. I have been recently diagnosed with primary lymphedema. Lol, I am 50 and have had it, visibly for about 10 years, kind of weird that it is considered primary. The first doctor got the diagnosis wrong and I didn't go back until another foot injury brought me to a podiatrist, who immediately diagnosed me. What an expense this has become! Anyway, because my lymphedema is mild, so far, I am trying to wear dresses as much as possible because I think I will lose this option in the future. Shoes, though, are always a challenge. I used to wear clogs a lot, but have stretched them out, so they don't fit anymore, now that I wear compression stockings. I don't know anyone with this disease, so I really enjoy your blogs and find that I am not so alone with this disease.

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    1. Hi there, welcome to my blog :-)
      I guess Primary Lymphedema is sometimes present from Birth and other times it lurks in the back, starting later in life. Mine started at the age of 36. So many doctors don't have a clue about Lymphedema, I am glad you finally got a correct diagnosis.
      I like your strategy with wearing dresses as much as you can now :-) I wish I had worn them more when I could, even though I did often wear a skirt. You may very well not lose that option - you wear a compression stocking and that way look after yourself.
      Thank you for your kind words. It really means a lot to know that there are others out there with this condition. And there are. Lots.
      Liz

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    2. Are Crocs safe for someone with lymphedema with frequent bouts of acute cellulitis due to foot fungus?

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  5. Awesome blog! I used to work a job where I spent hours on my feet, and NurseMates, while ugly, worked wonders.

    I've had quite good luck getting wide calf boots at plus-sized stores like Lane Bryant and Avenue. (Don't order online, because not all styles work)I love boots, I feel they camoflage the legs a bit so I can get away with wearing skirts and dresses. The prospect of squeezing into those boots is great motivation to stay on top of the swelling when I feel like slacking off.

    My current frustration is not being able to find flats that work. The world's obsession with toe cleavage means the end of my stocking is always sticking out.

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    1. Hi Michelle,
      thanks for the tips, NurseMates sure aren't pretty but they do look comfy.
      I too feel that with boots I could get away with wearing skirts and dresses that are not floor long but I have still to find the boots.
      About flats, how about buying two different sizes? It adds up but for me it's been a relief to do it this way, although I still have to look for wide shoes.

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  6. Hi, thanks for this post. I have never had to wear boots because I live in a tropical country but I've relocated to a small town in upstate new york for school and suddenly i have to buy boots for winter (because they have severe winters here). so i walked to the manager at the local walmart and told her about my condition and asked her to help me select shoes and eventually i went to the men's section where i bought brama shoes (one size).they fit on both legs because i lace up my right leg tightly (that's the leg without lymphedema) and i loosen up the shoe on the infected leg.
    thanks for these new tips though, it'll help me buy more shoes.
    well done for your site!

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    1. Hello Ekuba, thanks for writing :-)
      Great tip with the Brama shoes. I googled them and where I am we have this style too. They seem very sturdy and the lace-up solution are great for us leg-lymphers.
      Stay warm!
      Liz

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  7. I have lived with Lymphedema and didn't find out that was the problem until 8/2009. It's been hard finding anything. I hate wearing pants and jeans. I probably will never wear shorts or capris again. I can't even afford the compression garments that I need to fit my legs they are so big. The are shaped like a steroid turkey leg. I can't buy a date with these legs. It's so embarrassing.

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    1. Hi there, thanks for reading my blog :-)
      It is depressing that we will probably never wear shorts or capris again - I can't bring myself to show my ugly stocking.
      I am so sorry to hear you can't afford the garments. You really do need compression. How about over-the-counter stockings, they are much less than the custom made, and it would surely be better than nothing? I think that lymphedemaproducts.com are not too bad pricewise.
      I agree about the dating, I too am embarrassed and can't bear the thought of telling someone new about all this, let alone show him the ugly leg.
      At least now you know what it is you have and what to do about it. I wish you all the best. Have hope, things can get better :-)
      Warm regards.

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  8. Where can I find shoes for a toddler girl, need a size 6 or 6.5 wide?

    Grandma G

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    1. Hi Deandra,
      I so wish I could tell you but I don't know. Perhaps other readers can help.
      Liz

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    2. New Balance sells baby/toddler/kids' sneakers in wide widths.

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  9. MaxiMed Therapy works with lymphedema patients everyday. We will let them know about this post and recommendations. www.maximedtherapy.com

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  10. I have just been given the diagnosis today of Primary Lymphedema, thought to be related to Milroy's disease. I'm still trying to get my head around it all. I'm 29 and about 10 weeks a go my right ankle swelled up, this eventually resulted in my whole leg. I'm happy to say that now the swelling I have daily stops at my knee but learning that there isn't a cure, although hope of managing it for my life is high, is heart breaking. I know there are many other people with life threatening diseases that may feel I'm being melodramatic but psychologically I'm struggling in terms of enjoying being feminine and being very conscious of my large leg. When it has got really bad I have also struggled to complete full days at work, which although my employer has been understanding, and I have tried to do as much work at home as possible, is affecting me. It was a big relief though to find this blog and see how other ladies are coping with a similar diagnosis.

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    1. Dear Sarah. I am so sorry and my heart really goes out to you. Heartbreaking is indeed what it is, I've been there and to some extend I am still there.
      You are not being melodramatic but I know what you mean. However, just because some are worse off than we are doesn't mean that our pain and grief is not real or not serious. It is very real and very serious for us. I know exactly what you mean about feeling feminine. Even though we may not feel feminine we can still look so.
      I learnt that it is not uncommon to get depressed and withdraw having been diagnosed with Lymphedema. I thought it was just me, but it really isn't.
      You are at the beginning of a journey. Know that the skies will get brighter as you travel, and know that you will learn how to manage this condition.
      I am glad you found my blog.
      Warm regards,
      Liz

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    2. I just learned of a website called Shoes of Prey that will custom-make your shoes if you send them very good measurements of your feet. The shoes seems to be around $100 (US) and I have never used them but thought I'd pass this along. I was diagnosed with lymphedema of my left foot/ankle ten years ago, fortunately it didn't get very bad until the past six months. Last week, an endocrinologist diagnosed me with Hashimoto's disease. Everything I read about it recommends completely cutting gluten out of the diet. I have been gluten-free for three days now and can already see a visible reduction in my swelling. Good luck! -Lori

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    3. Hi Lori,
      thanks for writing, that's fantastic that you already see a difference from cutting out gluten from your diet!
      Thanks for the the tip about the custom made shoes. The price is really not bad!
      Liz

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  11. Hi Sarah. Your story touched me and I just wanted to reach out to you, too. I found Lymphedemagirl's blog last year and it has changed my life. I am so happy you found this support and resource. I also wanted to tell you that life will get easier and you will be in a better place. Please don't feel like you are over-reacting or being melo-dramatic. This is a real condition that can cause serious health and emotional problems. No, it's not life-threatening, and sure there are a million worse things we can have, but it still sucks (for lack of a better word) and it's hard. My name is Nicole. I am 25 years old and was diagnosed with lymphedema when I was 11. I've had quite a few years to learn to accept my left foot and leg. Like Liz said, it's a journey. If you ever need to vent or talk about treatment, we are all here. Stay strong!!! And don't let lymphedema define you, it's part of you, but it doesn't make you who you are.

    Nicole

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    1. Hi Nicole, thank you for your input. I am warm inside when you say my blog has changed your life, from my hearth thank you!
      Well said, Lymphedema is part of us but it doesn't make us who we are. Lymphedema is a story in our life but it is not the whole book :-)
      Liz

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  12. Hi everyone! I am overjoyed to find this blog because I don't feel comfortable talking to everyone about this condition. I have had lymphedema for about ten years. It has been a hard road with a lot of tears and hurt. I mostly keep it to myself because I don't want all of the questions from loved ones. I try to hide it as much as possible but I made my mind up not to let it define me or stop me from being happy. The worst part of it is not being able to find shoes. Thank you for creating this blog. I already feel that I know the beautiful people who have commented and I look forward to interacting with each of you.

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    1. Hi Vikisha, thanks for writing, good to have you onboard :-)
      I recognize what you are saying about tears, hurting, keeping to yourself and not wanting the questions. Been there. I admire you for deciding to not let it stop you from being happy, well done! Yes, shoes are a nightmare... I mostly buy them in two different sizes, one for each foot. I am still sad and frustrated that I can't really wear dressy shoes as my forefoot bulks out but I try to work around it with semi-dressy boots or ballerinas where most of the foot is hidden by my widelegged pants.
      Warm regards
      Liz

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  13. Fat Foot Barbara8 September 2013 21:46

    An addition for your list.....
    I am in California. About 15 years ago my housemates folks visited from the UK. His mom had shoes that looked like they might work for me. They were made by Hotter Comfort Casuals, a company that was not available in the US at that time. After his folks left, I received a surprise package from the UK with a pair of Hotter "Easy" shoes. His mom had estimated my size perfectly! That's all I have worn since then. I used to have to hunt them down but now they sell in the USA via their website.

    One of the thing I appreciate in the Hotter shoes is that they are very lightweight. I hate heavy shoes! They have quite a few styles in EEE width and many with velcro straps, including some fashionable styles. Don't know about getting mismatched sizes but they seem to by very customer focused so it would be worth asking if that's what you need.

    In the UK go to www.hottershoes.com and in the USA its www.hotterusa.com. They will send you a nice catalog if you request.

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    1. Hi Barbara,
      thank you heaps for this great tip!! I checked out the shoes and they look real comfy, so thanks again!
      Warm regards
      Liz

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  14. Hello All!
    I am a 43 year old who has this condition since I was a 19, and misdiagnosed until my late 20's. I am luckier than most, as my lymphedema is spread evenly over both legs, ankles and feet. I try not to let it affect things too much and, although am self conscious about my legs(wear trousers and maxi dresses all the time), I have no problem trying to show them off to educate people about my condition. I am very frustrated that the majority of people haven't heard about it. I would dearly love to wear pretty shoes but have come to the conclusion that I have to adapt. Flyflot mules are very comfy, don't look too old fashioned and are anatomic. Just to let everyone know though-all over spray tans are a 'mare. Thought I was going to look great for a night out until I looked down at my ankles that had a white ring circling each one where the spray had missed the swollen bits!!!!!!Not a sexy look.

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    1. Hello Madam Jojo, thanks for writing and for joining us :-)
      i too am angry that even many doctors don't have a clue about Lymphedema - it was pure luck that I was diagnosed correctly!
      I think you are very cool for showing your legs and educating people, well done!
      Thanks for the tip about spraytan! I did it a couple of times years ago but if I was to do it again it would be on upper body only as I wear the compression stocking at all waking hours anyway. The last time I did it they completely overdid it on my hands and it looked as if I'd been painting - and that's what I told the other weddingguests if they asked...
      Liz

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  15. This is what I love about this site - we can get together and share information and concerns about everything, down to advice about spray tans. It's such a help, especially when you're newly diagnosed. Thanks again for providing, Liz!

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    1. Thank you Elaine for being on board!
      Liz

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  16. I found a really good show made by Crocs that are really comfortable, cut and they pretty much can fit any size foot because if the way that it is made with elastic all the way around. They are the Springi Flats by Crocs. http://www.crocs.com/crocs-springi-flat/11977,default,pd.html?cid=02S&cgid=women-footwear

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    1. Hi Anna-Marie, thanks for writing, and thanks for the tip! The Springi Flats are funky and they comfy too! They are reduced right now!
      Take care
      Liz

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  17. Hi im kanyi so glad i came across this blog feels better knowing im not alone i live in Ghana West Africa.I have not been diagnosed with lymphoedema by any doctor but i did some research on my own about what was happening to my left foot.i dont even know if there is any lymphodema specialist where i live which is very depressing for me. im 23 the thought of living with it for the rest of my life freaks me out and makes me cry worst thing is i cant really talk to any one about it because they dont really know how i feel.It feels like my life suddenly changed over night and when people stare at my feet it breaks my heart every single time. please help how do i manage it

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    1. Dear Kanyi. I am glad you found me and all of us here. You are so not alone!
      You have come a long way by detecting that it might be Lymphedema. If you say Lymphedema to a doctor it will point them in a direction, where as many doctors don't have a clue what that swollen limb could be and wouldn't have found out on their own. I really do hope you will find a place that can help you with treatment. If not, there is a lot you can do on your own. You can buy compression stockings online, you can watch videos about bandaging and you can discuss things with other lymphers online.
      I know, the prospect of having to live with this for the rest of our lives is unbearable. Trust me when I say that things will get better for you. It will take time to come to terms with it but you will learn how to live with it and enjoy your life again. You will! Allow yourself time to grieve about what has happened. Time is working for you. When I was first diagnosed I was a mess and thought this was the end but now, four and a half years later, things are different, and have been for a long time. I still grieve and still have issues about my leg and not being able to wear certain things and all that but I am in a much different place than I was to begin with. You will get there too.
      Warm regards
      Liz

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  18. My wife has had Lymphedema for 11 years since she was treated for uterine cancer. As only one of several residual problems stemming from the radiation, it's still better than the alternative.

    I have decided to be proactive and try to work with a custom shoe manufacturer to get some shoes for her and possibly create a custom shoe site for others. My wife uses both custom made compression stockings from Germany, which last about 4 months, and a compression pump to help reduce the swelling before she goes to bed or in the AM. Therefore the shoes tops have to be made of flexible material that can stretch as the feet swell throughout the day. I told the manufacturer that shoes needn't be made to look like something from another planet, and that aside from being larger, with proper lines and shape, could be made to look reasonably stylish, just larger than the standard models sold in the store. Also there should be the ability to make casual shoes, dress shoes, and sneakers type athletic shoes, perhaps boots with easy side entry.

    They are anxious to move into this customized arena if there is a market. I realize it is not an extremely large market, but they can perhaps make enough on a pair of customized shoes to offset the sales of say 10 regular pair. If the shoes can be resoled by them relatively inexpensively they could last a number of years, as I doubt walking or running distances is going to be a major activity, and therefore there should be limited abuse.

    I have no idea what people would pay for a custom shoe, measured to fit when feet are at their least swollen point, and stretch to accommodate when the foot is swollen towards the end of the day.

    I'd appreciate legitimate feedback from readers of this blog, and perhaps even feedback from others at the treatment centers they attend to address this debilitating disability. I figure if users can have 3-5 styles in each type of shoe that would be attractive and more mainstream, as well as provide support and comfort, they might be willing to pay for the cost associated with custom foot wear.

    You can send me you thoughts at dustycoton@gmail.com

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    1. Hi Dusty,
      thank you for this. It is good news that someone is ready to move into this area, especially if the price is right. There are other shoemakers that offers custommade shoes and boots but for me they are way too expensive. I hope you have had some good response and will have. Please let us know what happens.
      Liz

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  19. My wife has had lymphedema for over 11 years following radiation treatment for uterine cancer. She can't find shoes that fit properly or have any style.

    I found a manufacturer who may consider going into customized shoes. I explained her problem and told him that not only does she wear customized compression stockings ordered every 4 months from Germany, but she uses a compression pump either at bedtime or in the AM to reduce the swelling.

    Feet would have to be measured at their smallest after pumping and their largest, after day end swelling, and the material of the uppers would have to be flexible enough to stretch with t he foot throughout the day.

    I told them that we'd be interested in casual, dress, and athletic shoes, as well as boots, and that there could be a market for these custom shoes if made attractive, comfortable, and durable with support. Shoes could be larger than shoes sold in the stores, but could replicate the same styles, at least in a reasonable way.

    I was wondering if others would be interested and if so what would the be willing to pay for custom measured shoes of this type. They will only do i if there is a market to get into. There are more people with lymphedema of the lower limbs than people realize, and no specialty shops to service them.

    I'd like t o get an idea of what people would be willing to pay for a nice good pair of shoes that actually would fit? Perhaps they could be resoled when needed at a much reduced cost similar to what Rockport does.

    Please send me your feedback if you are interested, and perhaps share my address with your treatment center or others you meet there to see if they would have an interest.

    Thanks,

    dustycoton@gmail.com

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  20. Are any people interested in custom made stylish shoes that will stretch with the natural swelling of the foot throughout the day? I found a manufacturer who might be interested in servicing this market. They would take your foot measurements after utilizing a compression pump and after a day of activity. Without the measurement at both extremes custom shoes are worthless

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    1. Hi again, Dusty.
      Where is this manufacturer located? Do they have branches in other areas or how would it work with having ones measurements taken?
      I am sorry it has taken me so long to reply.
      Liz

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  21. I just got back from the mall with my mom and it's always an emotional roller coaster when I have to buy shoes. I am 21 years old and I was diagnosed at the age of 17 but I still find it so hard to get deal with my lymphedema. I really glad I came across your blog while I was browsing for surgical treatment options for lymphedema.

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    1. Hi Tee, thanks for writing, I know, buying shoes is indeed not easy! I understand you find it hard to deal with, when young we want to enjoy life sorrowfree, wear what we want to wear and not worry about stuff like this. Keep your chin up, you will learn how to manage this, practically and emotionally!
      Warm regards
      Liz

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  22. I am near tears...I literally thought I was alone with "shoe woes". I just happened upon this site and am so glad that I did. Thanks so much for sharing your experiences; God bless you!

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  23. Wow! Happy to stumble upon this site in my bid to gather as much as possible information about my condition. I was diagnosed with lymphodema at 19yrs, I've had to live with it for 15 yrs now. Married, got two kids but I've cried and prayed none of my kids would her-edit this from me. I cant begin to tell all I've ben thru. As a Christian, from youth, I thought it was an attack(spiritual) LOL. I FASTED AND PRAYED SEVERALLY, Went for several prayer session with Men of God.It wasnt easy. I'm so glad a Doctor led me in 2010 to go learn about how to manage lymphodema through google search. Well, ever since then I've come to learn stuffs about how to manage the condition.Today on this site, I've learned to get two different sizes of shoes, oneto fit on my right leg(which is normal) and another to accommodate the bad one(my left foot). However, I really do not know what's been happening in the past few weeks though, I feel pains on the whole left leg, to my thigh and my waist line. I feel something stinging me in the leg most especially while standing and walking.Altho, the leg isn't so big(Elephantiasis) but I'm scared it wont get to that. I try to avoid getting depressed over it. Phew! I've written a lot here,just want to pour out my mind through this medium cause there is no one who really understands my plight out there. I'm a Nigerian and the Compression stocking I got is another nightmare. So painful wearing them for long hours. Those tapes on the edges on the toes and ankle causes pain and discomfort.Hmmmnnn, I fighting back tears as I'm typing this cause this is not a good way of living at all most especially when the condition isnt as a result of any fault of ours or due to our recklessness. All the same,we shall have the course to smile someday.

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