Downing Street Petition

[Bahons2]

Hello All

I'm new, British, currently living in France (is anyone else? - I'd love to hear from them) and have lymphoedema in both arms from breast cancer treatment.

Just to let any other Brits who use this forum know:

There is now a lymphoedema petition on the Downing Street Petitions website. The petition calls for more recognition of the suffering of people with both primary and secondary lymphoedema and for more money for treatment, education of healthcare professionals and research. The link to sign (where you can also read the full text of the petition) is:

http://petitions.pm.gov.uk/lymphoedema/

(The website will then e-mail you back and you have to click on the link in the e-mail to finally complete the signing process).

PLEASE remember that you MUST be a British citizen (expat is fine - there is a specific box to check for this for) or UK resident to sign.

Thanks for your support!

[evenwaba2]

Where in France are you. My daughter, who has lymphedema, is in a suburb of Paris. If you are near there, where do you get tretments?

[Bahons2]

Hi there

I'm in Carcassonne, so not very close at all, I'm afraid. I've lived here about 6 months, so I am still finding my way around the system.

What sort of treatment does your daughter get?

[evenwaba2]

She gets MLD two times a week but is having trouble with a few fibrotic areas. I'm not sure how good the therapist is. What treatment are you receiving?

[Bahons2]

Hi there,

I've been given a prescription for 15 sessions of MLD - I start on Monday (10th March)

I also take Endetolin which, as your daughter will probably know, you can buy over the counter here in France. I've been taking it for about 6 months now; it's supposed to do some good over time.

I also have a Class III hand held laser which I use to treat my lymphoedema myself and which I ordered from Australia.

[evenwaba2]

What is Endotolin? I've never heard of it. We actually live in the Massachusetts, US, but she is in Paris for a year as an exchange student.

[Bahons2]

Hi there

Endotelon is what they call an oligomeric proanthocyanidin.

I understand that they are found in Grape Seed Extract and Pine Bark Extract, among others. Endotelon is a standardised product.

The tablets are supposed to help lymphoedema if taken continuously and it apparently takes about 6 months for a noticeable effect. You can buy them over the counter at any 'pharmacie' here in France and 20 tablets cost just under 3 euros. (Much cheaper than the equivalent fancy tablets from a herbal outlet). I believe that some doctors will prescribe them, but if your daughter is not in the French Health Care system, it is probably easier and just as cheap to buy them directly from a chemist. I haven't had any unpleaseant side effects with them.

Hope this helps.

[Ann]

Since your daughter will only be in France for a year, you might want to make inquiry as to whether the US Food and Drug Administration approves these meds for use when she is back in the States.

Ann

[evenwaba2]

Since it is an herbal remedy, I doubt that it is FDA approved.

[Bahons2]

Just a thought....

Paroven is, I believe, a chemically related drug (not herbal), which I know is available over the counter in Australia and on prescription in the UK.

It seems to help some people. That might be an option for your daughter when she returns to the US.

[Bahons2]

And another one from me:

I'd just like to thank everyone who has signed the petition so far.

If you haven't already signed, please consider doing so (only your name appears, no other personal details will show) and if you have, can you think of any other Brit who might be interested in doing so? Friends, family, carers, therapists, colleagues?

[Bahons2]

Hi all

I just wanted to let everyone know that the petition now has no less than 200 signatures on it! This is significant, as the Government is obliged to formulate a reply (everyone who has signed will be e-mailed a link to where they can go to read it) to any petition containing 200 or more signatures - I believe this normally happens when the petition closes, which is January next year.

So, once again a big 'thank you' to everyone who has taken the trouble to sign, and is getting others to do the same, and also to the LSN who very kindly publicised the petition in the latest edition of 'Lymphline'.

You MUST be either a British Citizen (expat is fine) or UK resident to sign.

For anyone new to the board, here is the link again:

http://petitions.pm.gov.uk/lymphoedema/

[Bahons2]

Just a quick update on the petition!



( http://petitions.pm.gov.uk/lymphoedema/ )



It now has over 300 signatures.



Thanks to all the Brits/UK residents (patients, friends, family, carers, colleagues) who have given their support by signing.

[Bahons2]

Hi all

Just to let you know, the number of signatures to the petition has now passed the 400 mark.

Thanks again to all the Btits using this site who have signed and done their bit to spread the word.

[Bahons2]

Hi all

Just a brief update... the petition passed the 500 mark yesterday, so, once again, thanks to everyone on this site who has taken the trouble to add their name and spread the word.

It's greatly appreciated!

[Bahons2]

Another quick update.....the petion http://petitions.pm.gov.uk/lymphoedema/

now has well over 600 signatures.

Once again, thanks to all the expat Brits/UK residents (patients, friends, family, carers, colleagues) who have given their support by signing.and who have spread the word to others, too.

[Bahons2]

Number of signatures fast approaching 750

Thanks, everyone!

[Bahons2]

Hi all

Giving the petition a little bump, as there are less than 10 days to go before it closes and I'm hoping it will pass the 'magic' 1000 barrier!

Thanks for all your support to date.

X

S

[Bahons2]

Hi all

The petition closes at 2359 tonight, so I am just giving it one final plug and saying thank you to everyone who taken the trouble to sign over the last year.

If you've been meaning to sign and haven't got round to it, please do, but you'll have to be quick! Here's the link:

http://petitions.pm.gov.uk/lymphoedema/

[Bahons2]

Hi All

This is just a little update on the Lymphoedema Petition.

It closed with over 1,040 signatures on 27th January.

Everyone who signed will receive, in due course, an e-mail from the Downing St website containing a link to the official Government response. This may take a while.

When the response is ready, I'll also post it on here for those who didn't get the chance to sign. I'm not expecting anything seismic; more likely a load of weasel words, but at least 1,040 of us had the chance to tell them we didn't think what was currently on offer for most lymphoedema sufferers was in any way good enough.