I was wondering about the demographics of people with lymphoedema, so was wondering if I could ask a few questions.

Do you have pimary or secondary lymphoedema? Where is it?

Are you male or female?

How old are you now? and at time of first symptoms?

I'll start,

I have primary lympnoedema in my right leg, I'm female aged 28 and first had symptoms also aged 28, was diagnosed only a couple of months ago.

26 Replies

  • Hi,

    Good idea!

    I'm male, secondary lymphoedema in right leg following surgery to remove a sarcoma. I'm 34 this week and was first diagnosed when I was 32.

  • hi there :- secondary, one arm, female, over 50, diagnosed 3 years after the surgery that was underlying cause..and in full time work

    and as an aside the specilaist service I went to thought all patients were over 70 and not working so well done you for asking, and lets share the info when you have it

  • I am a 54 year old female with primary lymphoedema in both legs. I was first diagnosed in September 2012 after a severe bout of cellulitis which required surgery on a part of my leg that had become 'abscessed'. The abscessed part of my leg had been damaged by a hard knock from a school chair 5 months previously. No one was able to tell me if the chair knock caused the lymphoedema or the cellulitis caused it, but I personally think it was the chair knock as that's when my left leg started to swell badly. I wear full length compression on my left leg which varies between class 2 and 3 as I am badly affected by the underfloor heating in the school I teach in, my right leg is knee length class 1 compression. I also have to strap my left ankle with a very tight bandage 2-3 nights a week due to swelling and pain.

    I work full time but find I am less and less able to be as active outside of work as I was prior to all of this.

  • Im a 31 yrs old female, I have primary lymphoedema on my lower left leg.

    I first had symptoms after a nasty fall at age 22 and was officially diagnosed at 26

  • I'm female with primary lymphoedema in both legs and arms.

    First symptoms when I was 20, diagnosed at 24 after many hospital visits, I am now 25.

  • Hi, I developed lymphoedema in my left arm 3 years ago, 3 months after surgery for breast cancer at the age of 47. Later, it developed in my breast and the surrounding chest wall area. Just before it developed, a nurse took my blood pressure on that arm and assured me that it wouldn't matter for once. That might not have been the cause, but I wish I'd insisted that she used the other arm. At the moment my arm is good, but I have problems with my chest.

  • I am a 62 year old female , secondary lymphoedema in both legs .. diagnosed in November 2012 after a bout of cellulitis and ulcers...but have probably have the lymphoedema since around 2003 ..definitely since 2008 anyways as I remember that after a biopsy on my left leg it leaked lwhitish fluid for about a week or so after although my GP never picked up on why it should be leaking like it did..

  • woman, 51, secondary lymphoedema to both arms & hands & to torso after double mastectomy sept 2010

    right arm diagnosed 3 months after surgery age 49, left & torso a couple of months later

    ill-health retired, lymphoedema, arthritis & spinal problems compete & often want incompatible support!

  • I am a 66 yr old female.

    Secondary lymphodema after breast cancer in 2011.

    Right arm diagnosed November 2011.

  • I am a 55 year old lady (!) I have primary lymphoedema in both legs and my right arm. I was 51 when first diagnosed, following the death of my husband.

  • Oh and I forgot, mine is primary, genetic, my mum suffered with it. XXXX

  • Thank you so much to everyone who has already replied. It's really interesting to get an idea of the demographic of people with lymphoedema, and to see that I'm not alone as a younger person with the condition. My GP made me feel like I was the only one, and that it only usually occurs after retirement.

    I accept that the majority of cases of people with primary lymphoedema are over retirement age, but it's nice to know I'm not alone as a younger adult.

  • Hi Faethe - we have talked before when you were kind enough to answer one of my questions. I am a woman and I was 49 yesterday! I was diagnosed with Primary (Genetic) Lymphoedema in both legs in March 2012 but with hindsight I have probably been suffering from the condition since my early 20's. Due to my weight problem my big legs and swollen feet were always attributed to lack of control around food - but had I had treatment when I first asked for water tablets or diaretics perhaps my legs wouldn't have got to Stage 4 - with open ulcers and all sorts of skin problems. A year on and I am still having to be bandaged by the community Nurses every 2-3 days and each time I get down into compression stockings something goes wrong and I end up back t square one again! I hope this information helps - ad you are young, but you are definitely not alone! Alison.

  • 58 year old female with primary lymphoedema affecting both legs/feet below the knee. One leg/foot since age of 12 and other one since age of 30. Not diagnosed until well into 20s - possibly 30s. Have 2 siblings with primary lymphoedema - and one without (parents claim/ demonstrate no responsibility for passing it on!).

  • 35, primary in my legs since birth, so I've never known life without it!

  • Two of us - I am 65 had it since I was in

    my teens. primary genetic. 1 bigleg. My

    mother 95 since she was a child. They

    called her fat legs at school.

  • Hi, female, 58, left arm after breast removal in 2007, thank goodness for this site as we can all realise we are not alone

  • Hi, female,72, left breast after cancer op. & radiotherapy burns.

  • Hi, female, 39, primary lymph in both legs and left arm. Diagnosed about 4 years ago. Sometimes I find it hard to deal with, I have a nasty case of phlebitis at the moment that's not been helped by my reluctance to wear my compression garments!!

  • I am 72, female cancer op. in left breast 2 1/2 years ago. too much radiation, my breast is dark brown, sore, hot & swollen.

  • 32 left leg Lymphoedema, don't know if its primary or secondary yet. I've had it 18 months came up after a water infection.

  • Hi

    I'm 46 secondary in both lower legs and feet.


    Had about 3-4yrs but only diagnosed about 5wks ago.

  • nan2high

    Since my last post I have developed lymphodema in my trunk, particularly the left side and now it is developing in my left leg. I am increasingly depressed with this condition and the prospects for the future.

  • Hi I have primary in Left leg and secondary in right. It started about 15 years ago I eventually got diagnosed 14 months ago. - they are on both legs to knee I wear full time compression wraps and have been told this is for ever both legs to the knees It began when I was 44 and I am now 59year old the big 60 this september Hurrah!! I live in Dumfriesshire.


  • Female,34, left leg, secondary following sarcoma removal (3rd operation), diagnosed in 2012 following surgery in 2010

  • Hi im Alison i have secondry due to lymphnode removal during op to get rid of cancer . I have right leg and grion swelling. Im 44 now was 43 when diagnosed.

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