What advice would you give to a young person recently diagnosed with lymphoedema?

[LymphSuppNetwork]

[marykatesmum]

my baby girl was diagnosed at 7months she is now just 6 weeks off her 1st birthday and doing so well...be positive,be strong,and it doesn't matter when or how you achieve your goals so long as you do mary-kate is just meeting her milestones a little later and with a little more work than everyone else but the point is she is meeting them!!!

[suzie_danger_girl in reply to marykatesmum]

Oh bless your tiny girl, and bless you for being such a lovely mum xx

[marykatesmum in reply to suzie_danger_girl]

Oh thank you x

[LymphSuppNetwork Partner LSN]

Excellent advice Marykates mum - thanks for posting

[suzie_danger_girl]

My advice to a young person with lympheodema would be, protect your limbs, never think it doesn't matter. I believe if you have the diagnosis early enough you can these days prevent it from becoming such a big problem. It's so much easier to keep swelling off then it is to loose it, so wear the garments when you need to its worth it.

But don't be afraid to live your life. You can't live in fear, I used to think about people who I knew with it and was very scared of their problems, and thought I will be like that one day, its inevitable. It is NOT. The people I know like that were only diagnosed when it was out of control already. They had no treatment or garments or advice.

So now I think, there's no reason I should be like that if I take care of my limbs. So do the the things you want to do and just be mindful of lympheodema, then you don't have to be scared of it.

P.S for the really silly people at the back (like me) when the time comes

Do NOT tattoo. I admit it looks cute now but you will know pain like you never knew pain, and its stupidly dangerous

Do NOT pierce anywhere affected, piercings which get horribly infected do not look good

Do NOT sunburn. I thought my skin would split. I think it could have. FAIL.

DO wear air sole trainers if you walk or run or dance, they will save you from a world of knee pain

DO wear black stockings with shorts if its hot, worst the world will think is you're a bit emo. It's fine.

DO run, jump, wave your arms, pogo wildly in the pit, run about like a fool, as much movement as you can manage (remember your trainers), this kind of silly is your friend, trust me also, sing really loudly a lot, its good for you. They tell you deep breathing but singing and yelling or playing an absurd wind instrument is more fun.

Be busy and have fun, it is good for you!

[chemrommy2330]

I was diagnosed with it in my early 20s with lymphoedema in my legs I am a wheelchair user which makes my mobility very restricted, but I use garments (stockings) and farrow wraps (which are like gaiters - if anyone uses them) to control the swelling! I also have been referred to St. Georges Hospital in Tooting, London which is where I also had 3 weeks worth of Manual Lymph Drainage Treatment and it has worked very well!!! Obviously it depends on how servier the lymphoedema is but you'll need to go to the GP to get referred first!

[cathyleigh in reply to chemrommy2330]

I am due to see Dr P Mortimer in London on 8th October.

I have recently been diagnosed - finally after fighting different GP's and specialists for a diagnosis.

I have full body Lipeodemia and secondry lymphodema of both legs and feet- which the nusre specialist believes is genetic- I have a daughter. so I want to learn how to help prevent this condition for her.

interested in the mld treatment- how long does the effects of reduced odemia last? and is this on the NHS or private?

never heard of a farrow wrap.

[LymphSuppNetwork Partner LSN in reply to cathyleigh]

Hi Cathyleigh

MLD is very individual - there is limited scientific evidence that it works on an ongoing basis but does help as part of an intensive course of treatment such as bandaging. That is why it is not generally availble on the NHS except as part of such a course. However many many people do find that it helps the lymphoedema feel less tight and helps with the pain and discomfort. Most people access it privately making sure that the therapist used is registered with MLD uk. Farrow wrap is another kind of compression that wraps around the limb and fastens with velcro.

[cathyleigh]

Can not put a wise head on young shoulders- yet need to be clear of the preventative side of this condition, coax youngsters to be aware, and listen really hear their worries. then show by example the way you are active, wear your garments and raise awareness for others.