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Discussion Starter #1
My name is Martine Mockford and my 20yr old daughter- Serena - has recently been diagnosed with Lupus after being ill for many years.

She was often bullied at school for 'putting it on' and recently a family member said that Serena can't be 'that ill' which really upset Serena. So to show Serena that I care and understand her condition and that there are people out there that understand as well. I have set up a petition to No 10 Downing Street to the Prime Minister to increase funding for medical research into Lupus and targeted education.

Please show your support by signing the petition on No 10 Downing Street



I have also put an article in our local paper to publicise the petiton please see attached.

I would really appreciate it if you could sign the petition and get your friends and family to sign it as well.

You need to be a UK resident and to register your signature you need to register your name, address, postcode and email address and then you will get an email with a link to confirm you signature. Don't worry only your name will be visible.

Thank you very much

Kind regards

Martine Mockford
 

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Welcome Martine

What a brilliant idea Martine. I'm sorry about Serena's diagnosis but hope it won't be long before she starts treatment and feeling better.

I couldn't see an SLE petition on No.10.gov.uk site. Please PM me with the addy or post it here using devices like the word dot for . For PMs see top right Private Messages
I will change it to a link for you. Members need 15 posts before links are accepted
All the best - we have many younger members here and Serena might like to join. It's helpful to know others have the same experiences. There are some real mean ignoramusses around

Hugs to Serena and yourself

Clare
 

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Congrats

Martine
you are a great person to highlight what has happened to Serena, your daughter, and to petition for higher funding in your country.

That is how I feel in my country. I have been so impressed by the publicity given to lupus/aps in your country and USA.

It is so sad in my country, all that is hidden particularly in regional areas where I live and mo GP or specialist can help.

I believe the same thing happened to me 5 years ago where no doctor recognised what was really plain when I was able to get my medical records, and I researched lupus and aps. So I applaud you for fighting for more recognition for lupus and related conditions, and more publicity to show the fulfilling lives we can lead..
 

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A great idea,

I can't sign myself - not being a UK resident but I'll send the link on to my best friend who's a doc (even if a psychiatrist) and who realised I had lupus long before anyone else.

Katharine
 

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Thanks Joan :)

Katharine, it says you have to be a British citizen or UK resident. Maybe it's poorly expressed.

This will sound churlish, but I am not too happy about the rather vague wording. A priority need is resources poured into specialist care available in this country. I read that at St Thomas' Louise Coote Lupus Centre only two doctors and one secretary are paid for by the NHS. All the others are funded from money raised by St Thomas Lupus Trust. If there are not enough facilities, specialists and specialist nurses and all the back up, no amount of research discoveries will help us.

Cheers
Clare
 

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Don't know if I count as a citizen...I left the UK 22 years ago but I was born there and do have dual nationality - no idea
 

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Ah, it worked!!

I just signed as an expatriate and that did the trick :)

thanks Clare
 

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Jolly good ! :)
Getting a bit off topic, but might be helpful to others in a similar situation - if you have a British passport (especially perhaps, if marked with "The Holder has the Right of Abode") then you can sign the petition. I would say. ;)

Cheers
Clare
 

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Well yes, I did have one, haven't renewed it but yes, I do have the right of Abode.

And, as you say, useful to others too.
 

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Discussion Starter #12
Clare.T;520316 said:
Thanks Joan :)

Katharine, it says you have to be a British citizen or UK resident. Maybe it's poorly expressed.

This will sound churlish, but I am not too happy about the rather vague wording. A priority need is resources poured into specialist care available in this country. I read that at St Thomas' Louise Coote Lupus Centre only two doctors and one secretary are paid for by the NHS. All the others are funded from money raised by St Thomas Lupus Trust. If there are not enough facilities, specialists and specialist nurses and all the back up, no amount of research discoveries will help us.

Cheers
Clare
Hi Clare

I do agree with you that we need more resources poured into specialist care but when I did the petition my aim was to get awareness of Lupus, to people who know nothing about it explaining that there is no cure and therefore research is needed, which is a way of drawing attention. I also wanted to make people aware of the devastating effects it can have on sufferers and from my experience some health professionals don't have sufficient knowledge to support Lupus patients locally and that is why I am calling for targeted education.

Thanks
Martine
xxx

If you look at the petition and click 'more details' you will see:

More details from petition creator
World Lupus Day took place on 10 May 2008 and the annual Lupus UK conference was held in Glasgow on 11 May 2008; recognised that around 50,000 people in the United Kingdom and over five million people worldwide, of whom around 90% are female, have Lupus and further recognises that, while Lupus can be mild, it can also be disabling and sometimes fatal, has no known cure and causes many different symptoms including joint and muscle pain, fatigue, depression and kidney, heart, lung and brain symptoms as well as recurrent miscarriages; acknowledges that there is an urgent need to increase awareness in United Kingdom and worldwide of the debilitating impact of Lupus and the difficulty that can arise in gaining a diagnosis, given that it mimics a number of other diseases. I am asking for the government to support Lupus UK and other Lupus organisations across the world in calling for increases in funding for medical research on Lupus, targeted education programmes for health professionals and public and worldwide recognition of Lupus as a significant health issue.
 

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:thanx: :thanx: :thanx:


Thank you for the link to the petition, both myself and hubby have signed it and i have passed the link onto all our friends and asked them to sign it and pass it on, so hopefully there will be alot of signatures added real soon.

Take care :bunny: Jo :bunny:
 

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Great Idea Martine...

I have signed the petition and have emailed the page to my husband so he can sign it too

Claire xxxx
 

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Discussion Starter #16
Petition

Thank you very much to everyone who has signed the petition to date and sent it around to friends and family.

Kind regards

Martine

:bow:
 

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Discussion Starter #17
Trying to get people to sign the Lupus Petition

On Saturday I set up a table in front of a local supermarket - one of the few places that would let me stand in front of the shop trying to get signatures.

It was real hard work and people were going out of their way to avoid me.. even though I had loads of official Lupus UK leaflets, balloons, badges etc out of all the people I spoke to not ONE person knew what Lupus was.

I did get some names and email addresses and put them online - they still need to confirm online which I hope they do! You dont realise how hard it is to get people to sign unless it involves money like taxes.. fuel price etc..

I had one lady ask me if it was for dogs and when I said no she said she would only sign if it was for dogs.. strange but true..ha ha ha

I will perservere and not give up... I have found a couple of links on U tube which I sent around via email to get more signatures which has helped add a few more but as I have not posted enough posts so I cant post them yet but will post them once I can.

Serena found them a very useful way of showing friends what Lupus is all about..

Thanks to all who have signed.. I really do appreciate it.. as I am very worried about my daughter and at least this is keeping me focused on something else..

Lots of love
Martine
xxxxxx

marymackay;520309 said:
Martine
you are a great person to highlight what has happened to Serena, your daughter, and to petition for higher funding in your country.

That is how I feel in my country. I have been so impressed by the publicity given to lupus/aps in your country and USA.

It is so sad in my country, all that is hidden particularly in regional areas where I live and mo GP or specialist can help.

I believe the same thing happened to me 5 years ago where no doctor recognised what was really plain when I was able to get my medical records, and I researched lupus and aps. So I applaud you for fighting for more recognition for lupus and related conditions, and more publicity to show the fulfilling lives we can lead..
 
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