Hibbs Lupus Trust by Stuart James Photography

Founder, John Hibbs, launched the Hibbs Lupus Trust in 2011 in a bid to raise awareness of lupus and to set up a network for the people the disease affects having supported his sister through her diagnosis three years earlier.

Over 15,000 people across the UK live with lupus which is a chronic autoimmune disease that ravages different parts of the body. It is difficult to diagnose, even harder to live with and a challenge to treat.

Lupus is mostly hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure. With its health effects ranging from a skin rash to a heart attack, lupus is debilitating and destructive and can be fatal.

There is no boundary to the physical, emotional and economic impact of lupus and the disease affects people of all nationalities, races, ethnicities, genders and ages.

Lupus can affect any part of the body in any way at any time, often with unpredictable and life-changing results; potentially disabling sufferers, preventing them from working and leaving them requiring lifelong medical care.

While lupus knows no boundaries, knowing all one can about lupus has the potential to help control its impact.

John’s sister, Viki Hibbs, was diagnosed with lupus in 2008 aged just 25. While Viki now manages her illness with medication and regular visits to Cannock hospital, John was frustrated by the lack of information and support available for his sister, other lupus patients and their families. Determined that no one else would have to go through the same isolating experience, John set about founding the charity.

Now, five years since launching the Cannock based Hibbs Lupus Trust, the charity is celebrating a substantial achievement of having reached the milestone of raising £125,000 which will be used to provide facilities, equipment and services for NHS hospitals and Foundation Trusts for the benefit of lupus patients.

John Hibbs commented: “Frustrated by the lack of information and support available for my sister, I was determined that nobody else would have to go through the same thing. I ran marathons in a bid to raise money for the disease from 2008 to 2010 and raised over £20,000 but I didn’t feel like I was doing enough.”

“I launched the Hibbs Lupus Trust back in 2011 and the whole team of volunteers is delighted to have reached such a significant moment in our fundraising endeavours. We look forward to continuing to play our part in helping lupus sufferers now and in the future.”

Alongside its financial triumphs, the charity has celebrated many successes including setting up the first lupus patient support group in Staffordshire and creating a free-phone support line for patients manned solely by volunteers.

Since its launch, the charity has built up a strong online community, using social media platforms to provide support and information to lupus patients connecting them with other sufferers whilst also raising awareness of the symptoms. Early diagnosis is the key to reducing the life threatening complications associated with the condition and coming together through this forum is enabling this to happen.

This announcement coincides with World Lupus Day which the Trust are marking with their annual two and five-mile walks around Cannock Chase on Sunday 14th May 2017 starting at 10am.

Since 2004, lupus organisations around the globe have conducted activities to raise awareness and educate the public about the symptoms and health effects of lupus.

Pictured: Viki Hibbs and John Hibbs, founders of the Hibbs Lupus Trust.

Hibbs Lupus Trust by Stuart James Photography

Such a fabulous achievement from The Hibbs Lupus Trust, whose dedication and hard work has raised over £125000 to help those in need suffering with Lupus across the UK.

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  1. Claire dulson on April 29, 2017 at 07:18

    My daughter is 17 and from wolverhampton. She was only newly diagnosed in December. She has been in and out of hospital for the past 4 months. The disease almost killed her when she contracted Epiglottitis a serious throat infection which closed her airways down. We were lucky we went to New Cross hospital in time or else it would be a different story I’d be telling. Lauren is trying to get her medication right and I’d is still not well and I was shocked to here that people with lupas arnt entitled to free medication. She works and has to pay for her medication, surly the disease lupas needs to be recognised by the government and people given help. Cancer, thiriod and diabetics patients get help. This disease is life long and can kill. I want to somehow start up a petition to the right people to get lupas patients the help they deserve. Any ideas where I can start?

    • John Hibbs on April 29, 2017 at 07:28

      Hello Claire, I’m sorry to hear of the issues your daughter is facing. Please send her our best wishes and we’d love to see you both at our next support meeting.

      The Hibbs Lupus Trust has joined together with over 30 other organisations to campaign for an end to unfair prescription charges for people with long-term medical conditions. We have joined the Prescription Charges Coalition to campaign to abolish prescription charges for people with long-term health conditions. In the current system some health conditions qualify for exemption whilst others do not. Prescriptions are free in Scotland, Wales and Northern Ireland.

      The Hibbs Lupus Trust believes it is time for a fair and consistent system to be put in place. We believe that patients with lupus should have fair access to medications to help with the debilitating symptoms of this incurable condition. We support the need for free access to prescriptions for patients with a long-term health condition throughout the UK and will work with the Prescription Charges Coalition to bring about a fair and consistent system.

      Please take a look at this survey:

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