Want more info?

Hi all

Just thought I would mention a couple of official sites where there is good lymphoedema info to be had.

The first is the lymphoedema thread on the discussion boards of www.breastcancer.org (seems to be the American equivalent of this site)

It takes a bit of searching through, but there are lots of posts and links concerning sleeves (such as different colours), therapy and new products (eg, night sleeves) to help sufferers.

The second site belongs to the Lymphoedema Association of Australia. It is currently being rebuilt, but is an absolute mine of information on all things to do with LE

The address is:

www.lymphoedema.org.au

If anyone else has a favourite lymphoedema site, I’d love to know about it.

Thanks

X

S

Hi

i don’t have lymphoedema but i have read the posts you have written because it may happen to me any time.

i wanted to say thank you for the info
J x

Hi j

Thanks for your kind words.

I came across a bit of a depressing statistic the other day on of the sites I’ve just mentioned. A study of a group of women with breast cancer had shown that, after 20 years, 49% of them had lymphoedema, ie that the percentage of lymphoedema sufferers had continued to rise over time. On the plus side, I suppose that anyone who is alive 20 years after being diagnosed with breast cancer may well consider this a price worth paying - I certainly would. It also highlights the fact that, as the survival rates for breast cancer continue to improve, so the incidence of lymphoedema will increase. (So you are right to be vigilant, j!)

I’d also like to mention another official site, which Rowena thoughtfully added to the thread ‘Lymphoedema and Altitude’:

it is:

lymphnet.org/

X

S

Hi

I thought I’d take a chance and post the link to this site:

www.mlduk.org.uk

for everyone who needs, or who thinks they might need in the future, some manual lymphatic drainage for their lymphoedema.

(It is the website of the professional association of manual lymphatic drainage practitioners and you can use it to try to find a therapist near you)

X

S

Hi

This may be old news but a site I have on my favorites is uklymph (forums).

There is an MLD practitioner (Lynora) who seems responds to any/all queries in a very positive and informative way and I suspect provides invaluable info to take to medics as well as all the usual Q&A ,s from a very wide/diverse membership so great for treatment stuff (including mini trampoline bouncing!)

There is also links to many other associated sites on the home page

If only i was IT literate and knew how to provide the link!

Flynnsmum

Hi Flynnsmum!

Thanks for giving the uklymph.com website a plug. It was set up by the East Kent Lymphoedema Support Group, so I’m assuming it’s ‘official’ and that I can post the link:

www.uklymph.com/forums

I agree, Lynora is brilliant - a mine of information on lymphoedema - and she also seems to know a lot about how fight your corner when it comes to getting treatment on the NHS (referrals, appeals, etc).

Bye for now

X

S

Hi,
sorry to hear you all suffering from this. If anyone lives near Chelmsford Essex, we have a centre called Rochelle house which do the manual treatment on lymphodeama. They only take donations for treatment.
Sorry Bahons I know you are out of the UK, but it may help someone else.
Lily x

Hi Lily

Thank you very much for posting this information - it was very thoughtful of you and I’m sure it will be of interest to people in that area.

(PS I’m finding it a bit easier to access treatment in France).

X

S

Hi all

There is a new website for lymphoedema, american based.

Full of good info’ on how and where to get better/nicer/more comfortable sleeves and pictures of how a well fitted sleeve and glove should look when they are being worn.

Good tips on topics such as flying, too.

Try: (you need to add the w’s): stepup-speakout.org

X

S

Here’s another official site:

lymphovenous-canada.ca/

Action-packed home page, lots of news on research/trials.

X

S

Hi Bahons

I wonder if you know of any practioners or information for people like me whose worsening lymphoedwma is caused by cnacer…ie. tumours blocking lymph.

My lymphoedema is quite bad at the moment and I am thinking of consulting a local MLD practitioner. My breast care nurse is disinteresed because my lymphoedma is directly cancer related, not just a result of surgery.(they like all that measuring up and making you feel special when you’re a primary patient…but get all funny I find about the prospect that you’re going to die…) Also its strange but in the scheme of things lymphoedma is my least worry…only getting to me now because arm is so much more swollen.

best wishes

Jane

Hi Jane

I’m really sorry to hear about your worsening lymphoedema - it must be the last thing you need.

Finding a private MLD therapist sounds like a good idea; - I imagine she might need to speak to your oncologist to make sure it is OK to treat you.

I am going to pm you some info’ now.

X

S

Bump for Jan, Nanna, Moira et al!

X

S