Words by Smiley Team
The Hibbs Lupus Trust are on a mission to ensure that no one goes without support whilst seeking or receiving a Lupus diagnosis.
The charity was founded after Vicki Hibbs was diagnosed with Lupus and found there was little support available to her.
"Back in 2008 she was 25 and just all of a sudden became very totally very sick, went to different GPs and different consultants and it was diagnosed as a virus or eczema." says John Hibbs, Vicki's brother & Founder of the Hibbs Lupus Trust.
"It wasn't till a different GP took more of an interest in her joint pain that he referred her to a rheumatologist.
"So it was then when she saw a rheumatologist. He had an instant feeling that it was was lupus and fortunately for Vicki that happened within three months of becoming very poorly."
The family decided to get involved in fundraising activities, but at the time, there was little support for those living with Lupus in the family's local area in the Midlands.
John explains: "I then took on some challenges and ran the London Marathon in 2011. We did that for the National charity which was all well and good, and we raised lots of money."
"In terms of benefiting my sister who was based in the Midlands, it did very little as there still was not anything going on here.
"We just got to a point where we thought we are doing all this fundraiser we're doing all this awareness, both myself and my family - we want to do more more for people here in Staffordshire and we just decided to set up our own charity. And that's really where it sort of. It took off and, and to where we are now."
Since it was established, the Trust has celebrated many successes including setting up the first lupus patient support group in Staffordshire, creating a freephone support line for patients and raising over £125,000 to fund equipment and support services for people living with lupus.
Funds were raised in a variety of exciting ways, including the creation of the Lupus to Lupus challenge. Lupus Way in Ellesmere Port and Lupus Street in London are separated by 200 miles and the charity challenges each person to complete a total of 200 miles within a three-month period. That works out at 2.2 miles a day over three months.
Back in 2012 our founder John came up with the Lupus to Lupus challenge and cycled the route, completing the 200 miles in a single day, 19 hours to be precise. In light of the pandemic, the charity have made the challenge virtual - one that anyone can get involved with. Participants could aim to complete 200 km or even just 200 minutes of exercise.
Social media has played a key part in the Hibbs Lupus Trust success. Through their online community the Trust has been able to raise awareness of lupus and the work of the trust, raise funds and provide support.
Support is key to what the charity does, as John explains:
"We have a helpline and while we're not medically trained so we can't give medical advice, we can give the reassurance that there is somebody there at the end of the phone. Obviously many people who get lupus have never heard of it or does not know anybody with it.
"It can be very isolating so the big thing is there that we're there at the end of the phone."
To find out more about the Hibbs Lupus Trust and how you can get involved through donation, fundraising or volunteering, head to https://www.hibbslupustrust.org/
