[LoopyLoo]

Hi Folks,

Just found this article which I'll copy out in case the link disappears.

New Immune Disorder Charity Launched

A new charity for people affected by immune, auto immune and chronic disorders was launched.

The Butterfly Group will support and care for those affected by these disorders.

The charity's head office will specialise in more than 100 illnesses, symptoms and related disorders.

It will be the only charity in the UK that supports and cares for these illnesses as a collective group of disorders under the hats of "immune and auto immune" disorders.

The charity's founder and manager is Christina Lukacs, 39, who suffers from one of these conditions, systemic lupus erythematosus, in which patients have thick bood which can cause potentially fatal blockage of arteries.

Christina's condition once caused her to suffer a heart attack at the wheel of her car and she crashed into a parked vehicle.

She was lucky to survive and now says: "After being diagnosed with a serious form of one of the auto immune illnesses, I realised how difficult the illnesses were to live with and the lack of awareness of the general public."

The president and trustee of the charity is Dr Ramesh Gandhi OBE, a Wyre councillor representing Staina ward, who said: "The Butterfly Group will help provide information and support for people suffering from conditions that little is known about.

"They include forms of anaemia, rheumatic arthritis, nephritis, systemic lupus erythematosus, myasthenia gravis, Sjögren's syndrome and various types of thyroid disfunctions."

Although its head office will be in Blackpool, the charity will also support sufferers in Fleetwood and Wyre, as well as the South Fylde area.

For more details, contact Christina Lukacs on (01253) 347782 or e-mail [email protected].

http://www.fleetwoodtoday.co.uk/poulton/New-immune-disorder-charity-launched.4209972.jp

Hugz,

Pam xxx

 

[Clare.T]

They are going to have their hands full! The question is, what, apart from infections and surgical cases, is not caused by immune system malfunction.
(I think I got up in a bad mood this morning!)
:hehe:

Clare

 

[greenhaggis]

Hi there,

I do think its a good to have a new charity, as long as its well informed to help all types of auto immune if which there are many. Does look like its a local and not UKwide based charity!


Not sure about this bit taken from the report:

The charity's founder and manager is Christina Lukacs, 39, who suffers from one of these conditions, systemic lupus erythematosus, in which patients have thick bood which can cause potentially fatal blockage of arteries.

Its not how I would describe the disease SLE in the first instance!

Well good luck to them anyway - perhaps someone on this site will get some good support from them and then let us know!

Lesley

 

[cad]

Hi All,
sounds good if they are informed and have the resources to deal with po!tential clients.
I agree with the description above Lesley, that is perhaps not the most acurate description of the disease and is more specific to one element of it.
A little misleading i think.

Cassie

 

[Lily]

Thanks for the headsup Pam

Now who is going to contact her and complain about the misleading description the paper put about Lupus? :bigsmile:

love
Lily

 

[nicky00]

What about linking her here so that there is some union of collective information..

Gosh I sound like some political hippy...

Can,t we give her the link so she can use this site to at least re evaluate the facts?

I certainly dont mind Lily but you are better at it

Nicky

 

[LoopyLoo]

:lol: You guys never let me down. I had decided not to comment when I posted as I wasn't sure I was informed enough and didn't want it to seem like I was slating them.

Hugz, :hug:

Pam xxx

 

[Clare.T]

Pam :lol:
Yes we are a cynical, critical bunch speaking only for myself I mean:lol:
Who knows how the reporter garbled what he was told. Presumably she has APS as well as SLE.
Now, I would love to know what they propose doing with the funds in greater detail.
Cheers
Clare

 

[A1marva]

Champion for the incurable

I googled and found this.




Champion for the incurable

Christina Lukacs who has formed the Butterfly Group-a charity to help Immune, Auto Immune and Chronic Disorder sufferers



Published Date: 07 June 2008



By Jacqueline Morley


CHRISTINA Lukacs used to work in public relations for some of Blackpool's biggest names. Now she's on benefits and battling a disease which attacks every part of her body.
Today she's using her skills as a communicator to set up a brand new charity to help fellow sufferers. It's a first for the Fylde and medics hope it will benefit patients across Britain.

Systemic lupus is an auto-immune condition, one of around 100 loosely related disorders, which in turn affect hundreds, possibly thousands, of folk on the Fylde.

It's an inflammatory disease which attacks skin, joints, tendons and organs and was triggered by a viral infection, although medics don't know for sure.

Christina reckons that, in turn, was caused by a car crash. She simply couldn't fight back to full health. Her energy was sapped, her reserves low.

"I'd never been in hospital before and suddenly there I was, unable to recover. I've not been fit since."

She is supposed to see her consultant every three months but in reality it's more like six because of the sheer pressure of work on medics.

There is no specialist auto-immunity nurse locally. Christina reckons that's a huge gap in the health care safety net, through which countless local suffers of auto-immune conditions fall. And while most will receive treatment, there is no effective cure, hence the need for more research and self-help.

Christina learned all that by trying to find out what was available. She established the links between various conditions and the fact that, once afflicted, many patients fall prey to other related disorders.

There are about 100 immune and auto- immune conditions – from coeliac disease through to HIV.

Christina joined her specialist lupus charity but decided an umbrella charity was needed to unite the lot, pool resources and share help. What's more, medics and other charity campaigners agree. So next Saturday, June 14, the Butterfly Group will take wing.

The new charity is going through the nightmare of red tape registration with the Charity Commission and is now seeking funds for premises in Blackpool.

It all starts with a fundraising party, the aptly named Chrysalis Ball, at Blackpool's Imperial Hotel, at 7pm, £30 a head, with '90s pop star Anthony Kavana thrown in and other entertainment.

Why butterfly? Because they are delicate, beautiful, ephemeral, yet crucial to the eco system.

And her condition, systemic lupus, the worst kind, is distinguished by a butterfly rash, indeed it's common to many of the allied conditions.

The rash is the least of it. The disease plays **** with her joints and tendons and just about every organ going. It can flatten her for weeks at a time. There is no cure.

The full article contains 456 words and appears in Blackpool Gazette newspaper.
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[cad]

Yes that description is much better, i wonder if she is aware of the other article?

Cassie