Hello.

[vix123]

Hi everyone, just signed up to the sight. I was born with primary lymphadema in my right leg. I have been living with it now for 28yrs. Just wondered if theres anyone on here that was also born with it. X

[LymphieJem]

Hello Vix123,

I wasn't born with it but it started in my left leg at 16 for me so I've had it about 17 years now. I probably had it since birth but with primary lymphoedema it often doesn't start to show until after puberty.

How are you finding it to cope with on a day to day basis?

Jemma

[vix123]

Hi Jemma, im coping a lot better these days since ive became a patient at kendal lymphology centre. I wear compression hosiery 24hrs a day (when im being very good ;-)) and also go for regular massage therapy. Also since going the pain I was experiencing has significantly reduced :-).

Before I got the referal I was pretty much left to live with it and wasnt under the care of anyone other than once a year trips to london until I was 16 which I was then told I was unable to hav the debulking surgery and that was the last time I went.

I finally went to doctors last year to be referred bk to the hospital so I could ask for an amputation as the pain was unbearable and felt all I seemed to do was pop pills,then the doc said she would refer me to the clinic.

How about you? Are you undergoing any treatment?How is the shape/size of your lymphadema?

Vicki x

[vix123]

Oh and I forgot to say when coping with day to day life. The clothes bit sucks. I dont know about you but I find it next to impossible to find anything to wear with the shape n size of my leg below my knee. X

[Chris21]

Hi fix 123

I was born with it 58 yrs ago, also in my right leg, in my thirties it suddenly went into my left leg too, so at least now I have two tree trunk legs. I used to have below the knee stockings but now have thigh length. My hospital don't want to know as its only lymphodema! I have regular private leg massages and find it helps keep the legs/feet from aching

Do you claim vat back when you buy shoes? I do, as I can only get shoes from companies that specialise in extra wide feet. I only wear trousers as I get fed up with people asking " ooh what's wrong with your feet"

Good days are when they just swell, bad days are when they feel like I have weights tied on the bottom of my feet.

Did you have problems at school? I remember the other children whispering and pointing and I had to wear boys school shoes as they were the only ones that would fit. Needless to say I hated my schooldays. I hope yours were better.

For every negative I always try to find two positives.....it helps x

[vix123 in reply to Chris21]

hi chris21.

Thanks for replying and sorry for late reply.

Firstly no i dont claim vat as i don't buy special shoes. I can just about manage to get in my converses and some wide fit shoes from new look. although i don't think my nurse approves or my back lol. But i haven't come across a company that makes any shoes that don't look like clown shoes. so feel free to name any websites if you know different.

School wasn't too bad. i went to a small catholic primary school and didnt have any problems there. High school was ok too i suppose, nobody actually said anything to me although i would get a few looks there. It was more out of school that i had comments and stares. the nickname that i was often referred to was 'popeye' as that is the shape of my leg below the knee. I didn't get too upset over it as i had lots of friends but i can't say that it hasn't affected me. Im very self conscious about my appearance which probably started when i went to high school, i would and still do hide it as best as i can and only tell people im comfortable with. I feel a bit cheated though as growing up my 'disability' was named as something else. i grew up with it being 'klippel-trelaurney-weber syndrome (excuse the spelling) and that it was really rare which made me feel even more ashamed and wanting to hide it more. It was only last year when i first went to the kendal lymphology centre did i realise it was only lymphedema and it wasnt that rare. i feel that if i knew that from the beginning and that if i knew and understood about lymphedema from an earlier age i wouldnt have felt such a freak for so long. I'm slowly gaining for confidence over the past year and im tying to see the positives now, now that ive got a treatment plan in place.

If you not under the hospital. Are you under a lympedema clinic?

Thanks vicki x

[DuncanP1]

Hi Jemma

I just wanted to say the exact same occurrence happened with me. I noticed my right foot slightly swollen when I was 15. I am now 34, and it sadly has affected my right foot, toes and leg are quite badly swollen and around 2 years ago it started in my left foot but it seems quite contained there for now.

I have had the dreaded cellulitis in my right leg/foot 4 times, which really does cause mental and physical anxiety - but last August I had the 3 week MLD treatment at St Georges Hospital in Tooting, South London which really did de-bulk the swelling and hard fibris areas a lot. I also found myself a lot more educated about the condition. The therapists were impressed that I still cycle to work in the bandaging! On a daily basis I wear the made to measure knee high compression on my left foot/leg and on the most affected, my right foot and leg I have the full thigh leg compression stocking which is generally quite a pain. I do have the toe gloves as well. The slight guilty pleasure for me is when I go clubbing, I just wear a knee length compression on the right leg as I forget I am wearing it and is much more comfortable.

I know from my own research, my lymphoedema is currently something I manage well, it doesn't manage me. Yes it is an awful condition and I dream of a magic cure but in general I just try and get on with things. I spent a month in hot & humid Singapore in April this year which of course I was worried about, I did wear shorts etc and used compression in the evenings which was a satisfactory solution. I'm really glad I went.

I cycle every day to work, eat quite well and maintain quite an active lifestyle. Many of my friends tell me 'its in my head' that people notice and think I should be more carefree about it. Over the years I have started to tell more friends/colleagues about the condition and everyone is very supportive.

I just wanted to share my situation - many people think they are alone. The LSN and for me personally, the Lymphoedema Clinic at St Georges Hospital under Professor Mortimer have been amazing, I attend the clinic every 6 months and is a great relief to be regularly reviewed by professionals.

All the best,

Duncan

[LymphieJem]

Hello Vix123, Chris21 and DuncanP1,

So sorry for the late reply, work and outside of it has been really busy!

Great to hear from others and understand what has been affecting you. I will try and respond to your question in turn.

Vix123 - You must have felt really in pain to ask for amputation, are you finding it any easier? I hope the clinic you go to now will give you more support, keep pushing for more help its the only way sometimes.

I am find mind manageable at the moment now helped by the cooler weather. Mine is more swollen around the ankle and top of my foot and up to my calf. Some days it looks slightly bigger than my right leg and other days it looks huge it depends on the day I have had, exercise I have done (I swim which helps a lot - I wear my bandage in the pool which helps as the muscles work against it and pushed the lymph up faster) and I cycle to work every now and again.

I don't have MLD as I can't get it free on the NHS and I don't feel it is severe enough to warrant paying of for it but that may change in the future.

Chris21 - kids are cruel aren't they, I don't think they understand it. I only had problems with lymphoedema when I was in sixth form and no one ever mentioned it. People ask me about it sometimes and I explain. Kids ask and they are intrigued and I try to explain it in a straight forward way.

DuncanP1 - good for you going to Singapore, I bet that was fantastic. I have been to Malaysia and the humiditty made it swell more and I took antibiotics to help prevent cellulitus but aside from that I coped with it. I am determined to not let it rule me and I will make it behave so I can live my life!

I have requested a referall to Professor Mortimer at St Georges, I am going to see my nurse in a few weeks so hopefully she will have a response to see whether I am on the waiting list by then as she wrote to him in July. We shall see anyway - I would like to have the Lymphoscintagraphy and genetics research and see if it is starting in my right leg. Incidently Chris I am 34 in 2 weeks so it may be that, that age things tend to worsen elsewhere. I try not to let it get me down and worry about what the future holds. I know it will get worse but I will cross those bridges when I reach them.

Are any of you going to the LSN conference in Birmingham on 26th October?

LymphieJem