LSN
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Is Lymphoedema a disability?

I have had Lymphoedema all my life and I have never regarded it as a disability however I am now struggling to work 5 days constantly on my feet and my GP has advised hat I shouldn't be on my feet more than 2 hours without a break.

This will be impossible with my current job so I'm in a quandary.

Opinions please

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I've just googled 'lymohodema classed as a disability', answers not overly clear, some saying no but if it has an impact on your life, as you seem to be having with work related issues, it could be classed as a disability do you have an occupational therapy dept you could contact? Good luck

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I have lymohodema and am on disability, social secure does think of lymohodema as a disability I was never turned down it only took the waiting time to quaifly for disability hope this was helpful.

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Please see a previous question in regards to this healthunlocked.com/lsn/post...

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Both my legs have LE and I was assessed re my job role by DWP (workplace assessment) and had an Occupational Health assessment (referred by my employer). Both assessments indicated that I am classified as being protected under Disability Law in light of mymobility and functioning being undermined/restricted by LE. Further, the recommendations of both assessments were taken on board so they've made workplace adjustments for me. If they didn' make adjustments it would appear my employer is discriminating against me - I have 20 minute breaks at work to elevate and do self-MLD.

I advise you ask your employer for an OH referral/assessment in the first instance.

Take care x

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DEAR FRIEND,WHAT IS MLD AND HOW TO DO IT YOURSELF PLEASE

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Hello

MLD is Manual Lymphatic Drainage. Ideally MLD therapy is completed on you by a qualitied MLD therapist (look on MLKUK website for qualified therapists in the UK). This therapy is crucial as part of Lymphoedema management to assist in removing/draining built up lymphatic fluid.

Self-MLD (also called Simple MLD) is a version of MLD that the LE patient does to themself to help drain built up lymph (best done 3-4 times per day). It starts with particular breathing exercises to stimulate the deeper lymphatics and draw stagnant lymph through the body into the trunk to be drained into the thoracic duct. Here is a link to good guidance on how to complete self-MLD. This is the best guidance I've found on the web (in English). Her instructions are clear and well demonstrated. She is properly qualified which I note as the web/utube has a lot of videos with incorrect instruction of self-MLD posted by unqualified people.

This therapist has videos for upper and lower extremity self-MLD, as well as one for proper diaphragmatic breathing which is very useful! It takes practice to learn proper therapeutic breathing, but it makes a huge positive difference in daily LE management.

Take care, Catherine x

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thanks Cath. I live far away in Eastern Europe

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Before trying MLD yourself I would contact MacMillan or a local Cancer Support Group for advice on clinics both NHS and private. This is what I did. I realise that the condition is also caused by other illnesses too so I do apologise in case.

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As it progresses it is definately disabling. I had to leave the work force many years ago due to other health issues. However, I would have ultimately had to leave because of the lymphedma as well since I can not stand long on my feet or sit long because of the leg. Not to mention that by early to mid afternoon, I'm exhausted. Not sure how it is where you live but ithe is definately part of my disability today.

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I empathise with you, I was a nurse working full time deoing 12 hr shifts, Have lymphedema in both legs whisch got to a point that my feet and legs were so swollen and painful. I eventually lost my career as no adjustments could be made in the workplace. My gp considered it a disability and with a huge impact on my life, I couldn't get any benefits and I falied the medical assessment they do dispite legs being bandaged, hardly walking. To people with the condition it is but to a lot of health professionals and everyone else it doesn't seem to be. Its very unfair and has cost me a lot in life.I wish you luck in getting help, some people try for PIP on government website but I'm so fed up with constant no I haven't anymore.

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Hi, if you have something that's going to be lifelong and it restricts your ability to live and work normally then it should be classed as a disability. I retired from my job through ill health because of it. Reasonable adjustments should be offered by an employer though such as part time hours, somewhere to rest, footstool etc. The other thing which I think can affect Lymphoedema is stress if you are in a stressful job working full time. It certainly affected mine. I find it much easier now that I'm not having to get up early to rush into work. Gives you more time to do the things you need to for managing the condition.

Sorry you are having to face this as it's quite a big decision for you.

Regards,

Marianne

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Hello Diane 999

I have had my L for 29 years, and treatments for the last 22 of those, and say, yes, it IS a disability. It prevents you from carrying out normal actions with the ease of a well person, and makes some of them really tricky, certainly not what is required in the workplace.

For many years I have had my toenails trimmed at the podiatrist's because of this condition, but the appointments are being reduced, so that occasionally I have to attempt it myself. Just the nail of my little toe can take up to 15 mins, as I turn my leg in various uncomfortable directions to make effective contact with the clippers. It's good that I'm retired, as I would be very slow in the workplace, and like you, would have to sit frequently to rest my leg.

If this helps, I always quote my L as a disability when seeking insurance e.g. travel, and when applying for my driving licence etc.

I have a Chi machine, which is very helpful, and makes my leg feel lighter for a while. You can see it online.

Good luck!

Jude4

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Dear Diane999, I work full time too as a PA which means I am pretty much tied to my desk and computer so have problems if I sit too long so I empathise with you.

Like other responses I suggest you formally request an Occupational Health review as they are legally obliged to consider whether they can make work adjustments and a letter from your GP would be helpful to that request I think.

I have been luck so far in that my employer (a University) was very open to discussing my condition and my bosses are supportive and provided an adjustable desk and opportunity to elevate my legs during lunch breaks. The ability to alternate between standing and sitting helps a great deal but I do know the swelling is worse when I work compared to my annual leave/weekends so I am planning early retirement.

I have also found that lymph stimulating breathing and exercises daily really helps move that stubborn lymph around whether you are working or at home. People quickly get used to seeing me practicing breathing exercises (in through the nose, out through the mouth with gentle pressure on the rib case) and other odd movements at my desk and sometimes join in! This can all help. You can read more about lymphatic circulation exercises and Lebed exercises can be viewed on YouTube or you can google the term and find lots of other exercises to try too.

Good luck!

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That sounds great and something I will try thanks

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Diane999, Hello, firstly how brave you are to have worked all that time with this. How on earth have you managed to cope and keep going? You must have been in agony and still are. Of course you need to put your feet/legs up, and up I mean by lying on the bed or settee (if possible) with your feet raised up for as long as you want.

Can not advise you about your job but sounds like you need a jolly good break. You can not go on like this and, to be honest your health is more important than any job. If you feel fit enough to do something o.k, but think of yourself for a change. Sorry I am not much help but am here with the rest if you need to talk. xx

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Unfortunately Lymphoedema is not classed as a disability, however if it's severe enough in extreme cases you can claim PIP (I've tried and failed)! I to have had to reduce my working week and feel your quandary. I've been told I can't stand in one position for more than 15minutes, which makes all activities - even cooking hard work!!! The trouble is some drs and employers / social security don't know how to deal with our condition as there isn't enough known about it. I hope your find a solution soon.

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