Lymphoedema Fashion

HI,

I am 21 years old and have suffered from primary Lymphoedma in my right leg since birth.

I am currently a fashion promotion student at university and have decided that for my last year of my degree i want to create a business plan and potentially start a business for bespoke fashion for lymphoedema patients.

Even after all these years I haven't come to terms with my condition and I think this project will give me the confidence I need, I will after all have to present my idea to 60 classmates who are completely unaware of my condition and have never noticed it.

I often suffer with finding trousers in my size, I am a size 8/10 and yet have to find trousers in a 12/14 to fit my leg which is very frustrating and can at times just look plain ridiculous!

Therefore, my question to you is, do you have the same problem whether it be your arm or leg?

The idea for this business plan is to create fashionable pieces in sizes that fit you, for example, maybe incorporating a size 10 with a size 14? Or even creating clothing using a material with compression combined? If you could give me any ideas you may have it would be greatly appreciated as I am keen to gain as much information and thoughts as I can to help me progress in this project.

The types of fashion I would be looking into would be jeans, jumpsuits, shorts, dresses, shirts and blouses,etc. The idea being that the consumer can feel included in the current fashion trends to give them the confidence and comfort they need.

Also if you could give me an idea of the prices you would be willing to pay for these bespoke garments, I would be looking at prices around £40-£100+ as I would have to consider labour costs and material costs and also the fact the items would have to be tailored to fit individuals :)

Thank you so much!xx

28 Replies

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  • Well done you! I think that's an amazing idea.

    I developed lymphedema in my right leg 2.5 years ago post surgery for cancer. This condition is horrible and whilst I manage to get by day to day it has affected my confidence. My leg is about 40% bigger than left and trousers and boots are a nightmare. I have good and bad days. I am 39, size 10/12.

    This is my first post, moved by what you want to do.

    I'm generally in jump suits, those baggy triousers and maxi dresses when I go out which is fine but I struggle with work when it's trousers and skirts. Hoping jumpsuits remain fashions or I'll be goosed!

    Price range, well, if it makes me feel better I'd pay as much as I could.

    Gillian x

  • Thank you :)

    Mentally I think is the hardest thing and reading your post actually brought me to tears! I don't really have anyone who understands what I am going through and even the nurses I have for my treatment are now refusing me it because I am not wearing my stockings enough, despite the fact I live at the gym and have a healthy balanced lifestyle!

    As a fashion student clothes are the one thing that make me feel better about myself and the frustration of not finding trousers to fit me knocks me down a lot.

    I just want to make everyone who is suffering from this condition have something that would make some part of their life a little easier!xx

  • Hi

    It's nice to speak to someone who gets it. My friends and family are fairly supportive and say they don't notice it, like you I try and hide it.....but there are times when I can't and it's upsetting.

    I do wear my garment 24/7 so it's my life now and I accept that. I just want to try and get it reduced.

    I am scared to exercise now, I was fairly fit doing high impact but now it's just walking and occasional swim.

    Can you recommend any exercises just to motivate me to try? It's crippling me that I am so scared to get back into some fitness regime.

    Thanks Gx

  • I was told that swimming is the best exercise for it but I have to say that it has always made my leg a lot worse! This isn't necessarily the case for you in any means so keep at it if you find it works for you!

    I tend to do a lot of weight training however i do find that walking /jogging on a treadmill or even cycling and the cross trainer is good? Because it allows you to be in control of the exercise you are doing as well as building your confidence and stamina at your own pace and gradually get yourself back into fitness. I am a diabetic also so eating healthily is something I have to do, but it has also helped a lot with my lymphoedema and my fitness. Drinking plenty of water and ensuring I am having fruit and veg everyday just makes me feel better and makes me want to get up and go to the gym, it has definitely helped with my self confidence as well because I feel so much better for it x

  • Hi, I do not have the same exact condition (lipoedema with peripheral swelling) but for me, pilates and aquabiking work really well. They are soft on the articulation and are really good for circulation (pilates because you are lying when exercising and aquabiking because of the water). You can even do them wearing your stockings and it can be a pretty intensive work-out without all the impacts that running or tennis have.

  • I completely agree and yes, fab idea! I never know what I'm waking up to as used to just have a huge right leg - but now my left leg, feet, thighs and abdomen join in at times. I studied fashion many years ago at college and love clothes - but have to live in leggings  - which just magnify the lumpy sausage leg problem or huge flappy legged trews which just don't do anything for me as I am plus size but at least they hide it. Slim legged anything that elongates the line of the leg without clinging to it would be a dream. Oh and an elasticated waist for those days when the fluid decides to take up residence in my abdomen. Its bad enough having to deal with it all physically isn't it? Not being able to look good in any clothing just makes it worse. I cried recently when I had no choice but to get a pair of orthopedic looking velcro fastening ankle boots as couldn't even wear ballerina flats anymore. 

  • Hi I am a lymohadeoma sufferer I have it in both legs from cancer treatment I'm 43 years old , my legs are one big problem I have found that asda do jeans they are called wonderfit I usually get them the next size up they cost 20 pound but well worth the price I wish every shop catered for the same condition it is very distressing especially shoes I do really sympathise with u u are not alone .wishing u well .

  • Great! Thanks for that.

    I'm fairly healthy too but it's the exercising that lets me down. It feels like a vicious circle as I'm too scared to try things now, which was not like me before.

    I want to get back into interval training but taking at my own pace.

    I dabble on and off this, as sometimes it frightens me how bad this condition can get. Please follow me and keep in touch!

    And thanks for getting me to post! 😊

    Gx

  • All I can say is check with your lymphoedema doctor/nurse and see what they have to say. As long as you wear compression when exercising it won't do you any harm and will actually improve your leg volume! There are also compression gym leggings you can buy that are better than nothing if you find your stocking is too uncomfortable to excercise in! Ive attached a link for you, they are a bit pricey but they'll do the trick :) skins.net/uk/womens-compres...

  • Hi, just want to wish you the very best of luck with your plans of starting your own fashion business. My Lymphodema is in my breasts so I have no idea on how difficult it may be to get the right size clothes, so I would certainly be interested in buying through you especially if you do compression/sports bras. X

  • Hi! It's great. I've been dreaming about someone like you since I have no chance to do it myself :)

    First price- like Happy2015 said it doesn't matter, I already pay fortune for my shoes.

    I always wanted to wear skinny trousers but they are the skinniest right above the ankle what is horrible for swelling.

    Unfortunatlety you have no power to make us feel good in shorts or skirts (even if they fit perfectly) unless you find some magic and make the swelling disappear.

    Best wishes!! xx

  • And one more thing. lymphedivas.com/en/shop I would really use some on them if they were for a leg :(

  • I hope you make a success of your plans. I have Lymphoedema in both legs but my right is slightly larger. I wear a lot of maxi skirts but they have to be 99cms in length which can be difficult to find. M&S are pretty good but of late most of their maxi skirts havebeen 91cms this season . To the general public that 8 cams makes no difference , however to me it does as it would show my compression stockings. Also if the bottom of the skirt is panelled so when walking the extra material is always covering you. A straight skirt always shows your legs whist walking. Natural materials are best with good cutting and style you can feel great. I normally pay around £40/50 for a skirt I really like but shop in the sales for everyday wear.

  • Hi MaddiG. I think it sounds like a great idea. My primary Lymphoedema appeared when I was 11. I am below knee both kegs. I didn't get compression garments until I was 30ish but then I didn't get a diagnosis until around then. Believe it or not but when I was 12 I was in hospital for a month while they tried to work out what was wrong with me. They didn't and we were going on holiday so I came out. Then the medics thought 6 weeks in plaster might work. It didn't so I was a "medical mystery" for years . A few years later my brother got it and some time later our younger sister. My much younger brother hasn't got it. We all now very good at wearing our compression garments but I didn't used to be (when I finally got some & a diagnosis). When we have a big family holidays we make an interesting sight on the beach! This has nothing to do with your request but I will come back later with some fashion stuff.

  • That is a brilliant idea. I have lymphy in one arm and at the moment kaftan tops are "in" so I have bought about 7 of them, lol. It would be great to get something made to measure and not be limited by the fashion of the day. I know this fashion will not last long and worry as to what I will do then. I feel for people with it in the leg. It must be so hard.

    I would like a coat, nothing special, just a coat that would fit my arm.

    I wish you all the best with your venture. Keep us informed.

  • I would love boots that would accommodate both my legs, have it in both of them below the knee and try to cover them as best I can

  • Dear MaddiG, I certainly agree with others that this is a great idea and wish you well with your plans. I would definitely buy stylish alternatives if they were available and your price range sounds reasonable to me. Since you ask for ideas I have sent you this unusually long post - you may be sorry you asked!

    I have lymphedema in my right leg following treatment for cancer and have to wear customised stockings on the right leg and standard compression (II/I) on my left leg. The fact that they end up looking so very different draws the eye and makes it difficult to wear skirts and tight trousers so first and foremost a pair that meet my different needs but look as similar as possible would be number 1 on my wish list.

    I have looked at the fabulous colours on the Lymphedivas website and agree with Aleksleg that I would most definitely love the choice of something like that for legs! That would be especially great if you can choose the same pattern for different compression strengths so both legs looks similar and I could team them up with dresses/skirts or even (shock horror) wear some shorts again! Something that looks approximately like jeggings but are compression garments would also be great.

    I recently found a pair of sheer beach trousers from Boo Hoo UK that are loose and airy to wear in the hot weather but beautifully patterned to distract the eye from the ugly compression stockings underneath - their only drawback is that the waist is also loose so can make you look tubby if you don't wear a tight fitting top.

    I also love the fashion for maxi dresses but really struggle to find trousers having to resort to very baggy linen ones most of the time and I find the tops of the compression stockings rub the crutch area and cause holes in no time!

    Finally, I think there is a big gift market out there too as my family are constantly asking me whether there are any compression gift ranges they can buy for me as they all want to help because they know it is the only thing that ever gets me down! Might be especially popular if there is a stylish range of seasonal styles and if individuals can log their measurements on a website and then enable friends and family to buy from the site for you without having to enter measurements.

    So there you have it, now all that is left to say is "you go girl!"

  • It is a great idea I have lymphoedema in my right arm which is much bigger than my left I wear a compression sleeve which do come in a variety of colours now and I get them on prescription so I don't pay. I keep meaning to buy a sleeve tattoo but concerned it may make the arm hotter. But my clinic has all the colours of the rainbow and even a tie dye I think. Because I work as a nurse I have to have subdued colours. I do not wear long sleeves anymore because they won't fit and buy bigger cardigans so your idea is workable I not sure what I would pay and how it would be manufactured but good luck !!

  • Your adea is a good one the pricing will be the main stumbling block. To be ill is expensive and we dont have much to spare as you will have found out.

    Trousers/slax i find the main problem most are just not long enough.

    The inside measurements dont apply when you wear leg straps as the strapping brings the slax up shorter. Most trousers you buy dont have enough hem left for me to let down and this makes me buy a larger size and have to taper them in on the tops.

    As you can tell i make my own most of the time.

    To start at £40 is too high for me and you are not selling a tailored cloathing to people who cant get in and out of things easy.

  • I think your idea for your business plan as part of your degree is excellent. I do think, however, to turn it into a business (even a small one) would be very challenging. The main reasons are because of the wide age range, the hugely varied impact people's Lymphoedema has on different parts if people's bodies and the price many would pay. However I would not want to put you off your great idea. I am both legs, primary, below knee and I wear very thick made to measure knee length with thick seams at the back. My swelling is fairly similar in both legs & I do think that gives me an advantage. I am ok for clothing in the cooler months as opaque tights are wonderful. I find buying boots upsetting but have built up a good choice. I have a range of shoes and buy clothes that go with footwear I already have. My biggest problem is finding smart dresses or skirts for the summer (without going full length). I won't wear knee length or above knee length in the summer, bare knees followed by knee length compression is not a good look! I can manage my wardrobe by buying on the High Street but I have to shop around & I have had along time to learn, though. On the price front I will spend generously on things I really want. £200 plus on boots, £100 on dresses, up to £100 on trousers, but I will often spend much less and do like a bargain. Hope this helps and Good Luck.

  • My daughter has lymphoedema in her left leg,when she wears trousers or jeans,she pads the good leg out with leg warmers or long socks,so both legs look the same. Good luck with your project.

  • That's such a great idea and I do hope it works out.

    I have secondary Lymphodema in my right arm after breast cancer surgery and would love to have more choice in tops. I particularly find it hard in summer as generally I want cover up the compression sleeve but getting tops with wide enough long or three quarter sleeves in light-weight natural materials is sometimes a challenge. In winter there are more options eg cotton Jersey. I also have bit of breast Lymphodema so that tops don't always sit right on that side, especially smarter blouses/work shirts with no stretch. I end up buying tops in a bigger size than I would otherwise need which is okay for some styles. It would be great to have tops that are cut to accommodate the bigger arm - eg batwing type style. Kaftan type tops are good but tend to come in crazy patterns that aren't right for all occasions!

    I suspect having a range of well cut styles in standard sizes but available in different materials/coloured patterns may work, with the option to amend measurements where standard doesn't fit. I suppose any degree of bespoking would always be more expensive but I would be willing to pay for something I know would fit and has been designed with Lymphodema in mind. I would be happy with you price range and would also pay more.

    I have just started buying coloured compression sleeves - anything but that grunge colour! There isn't a lot of choice plus my local Lymphodema service (fabulous as they are) don't have much experience with the more interesting sleeve companies, eg Lymphodivas. If you were to branch into compression garments in any way you may want to consider teaming up with a respected existing manufacturer to get the NHS lymphodema practitioners on side. As you will know, they have a limited budget to spend on each patient so I expect they would be reluctant to offer/prescribe garments they are not familiar with in case they are not of appropriate compression quality. Even though I am able and happy to pay for more interesting sleeves myself I want to be sure they will work and I would rely on the opinion of the NHS Lymphodema practitioner for that.

    Obviously the above only reflects my personal views and experience but I hope along with all the other replies it helps you get started in your research. Good luck with the project.

  • Hi!

    What a great idea! I'm 35 and was diagnosed in Jan. I've got right lower leg lymphedema. I wear a below knee flat knit made to measure stocking every day. Although it's unsightly it does keep the swelling down a bit.

    Like lots of the other replies, I've stuck to wide leg trousers, maxi dresses and maxi skirts. Summer work wear is my nemesis and this being my first summer win a compression stocking, I've stuck to black trousers and the occasional maxi dress. I'm lucky that I can wear casual clothes to work so do often wear jeans and boots. If I couldn't I'm not sure what I'd do!

    Some compression leggings/jeggings would be great!

    Buying shoes and boots is my biggest issue though. To buy a pair that fits both legs/feet is impossible so Somewhere where you could by a wider fitting for one leg and a different size for the other would be great!

    If something isn't on trend it can be very hard to find in the shops and that in itself can be depressing. The thing that your idea would offer above the ability to tailor the sizes would be choice!

    In terms of price, I'd be happy to pay what you're suggesting for good quality which I know will fit.

    I wish you lots of luck with it. X

  • Hi good luck with your course, this sounds amazing. I have a very similar story to lady in the first response only I am now 48. I was diagnosed & treated for cancer 2.5yrs ago. Like you, I am size 10/12 and work out regularly. I run though40-45 mins max these days and I do strength training with weights. Nurse told me to ditch the deadlifts and do water aerobics as best for my leg, as I can't seem to get this under control. Currently 8-12cm difference in size and nearly 50% more water.

    I would love a range of clothing, trousers are a nightmare as wide legs make me look 2ft tall & fat. Compression leggings/ trousers would be amazing. I also have a couple of long skits which work. A range in tights which were compression in one or both would be amazing.

    I cried reading these posts - this is hard t live with - I don't want to

  • You made me cry reading the end of your post. I have secondary lymphodoema in both legs due to very high dose steroids to control a condition I won't bore you with. I've had this now for three years diagnosed for two. I wear mid thigh compression stocking nearly every day. I cheat the very occasional day when it's just too hot. What I'm trying to tell you in my roundabout way is how things have changed. Two years ago when diagnosed my feet and legs were so swollen that I couldn't force a pair of size 8 shoes on and was wheelchair bound. Today I can put my own size 5 1/2 shoes on. I can walk a short distance with two sticks and , more importantly I want to go out and about again.

    Yes it's monotonous and relentlessly boring having to cream every night and wear stocking most days but I've learnt to live with that you just do you know. I tried not wearing stocking for three days and couldn't get my own shoes on again. I was actually glad to put my stocking on again 😊 and know that they would do the job and that in the general scheme of my life they are not that much of a problem. Take heart and good luck with your journey. Deborah

  • Sorry I made you cry, I was feeling sorry for myself when I posted. It is just relentless - thank you for your advice, I am glad you can get shoes on, walk a little and want to get out. That's just hard. I know what I have to do and am lucky as can still do nearly everything I did before. I wear full leg compression on one leg every day, like you I cheat a little & pay for it the next day. Good luck, I hope things get easier for you

  • Sorry I waffled so much I didn't finish in post above

    This is hard to live with, I want to have the freedom to choose what I want to wear and not just what I can fit into.

    I ditched the water aerobics and am back at the gym. I wear swetty Betty compression running tights in gym rather than stockings as I found them uncomfortable - cost £70 which is an awful lot. Sportswear that is reasonably priced would be great

    Good luck with your course

  • Hi! Thanks for your post; this sounds like an excellent project and addressing an actual issue for so many people. I hope this will also be a good process for you as an individual :).

    I do not suffer from lymphoedema but from lipoedema, which is in my case pretty much the same in terms of silhouette (for the legs, my upper body looks normal (size 2-4) but much smaller than my lower body, which is probably a size 6-8). I would love to be able to find trousers more easily, and not ones that are shapeless or plainly unflattering, and basically look like I am wearing whatever I could get my legs in – the awful truth :).

    I would pay over 100£ for instance for a pair of trousers that are tailored, have a shape, work for my silhouette and give me a sharp and professional appearance. For me, a tailored and clean cut are the key elements I am looking for. I would also be interested in something that is not what we call in French a "cache-misère", something purely intended to hide my body shape (large, dark, shapeless, unstructured trousers) but does something with my shape, my pear-shaped silhouette (thin waist, larger hips, etc.). A jumpsuit working for my proportions would be great for instance.

    The compression incorporation looks a bit difficult for me in terms of practicality and I am not sure I would be interested to have them incorporated.

    In the meantime, I have found foreign brands that are a significant improvement over the European brands, such as Mavi from Turkey for jeans (they have that "thin waist, large hips" silhouette).

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