With an official race charity for the first time this year’s race is very special. As we announced in May, we have teamed up with the Hibbs Lupus Trust and some of you have entered the Lupus Lap to add your support too. In the last of our pieces with our supporters and sponsors we caught up with John Hibbs, founder and chairman of the Hibbs Lupus Trust to find out a little bit more about what Lupus is and how his charity is helping.
Hi John, can you tell us a little bit about yourself and why you set up a Lupus charity?
My name is John Hibbs and I am the Chairman of the trust. My sister has lupus and as a family we wanted to raise awareness of the disease so we decided to take action ourselves and set up the trust. The trust was set up in order to support lupus patients and their families across Staffordshire.
Many people won’t have heard of Lupus, can you tell us a bit more about what is it?
Lupus is an autoimmune condition, which means that it is caused by problems with the immune system (the body’s natural defence against illness and infection). In people with lupus, the immune system starts to attack healthy cells, tissue and organs. It is believed that over 50,000 people throughout the UK suffer with Lupus of whom 90% are female. There is no cure! Symptoms can include; extreme fatigue, eye problems, joint/muscle pain, depression, miscarriage, hair loss, anaemia, facial and other rashes as well as the possible involvement of kidneys, heart, lungs or brain.
With such devastating symptoms many people will wonder how to know if they have it. How did Viki find out she had Lupus?
Viki was diagnosed with lupus in 2008 aged just 25. She started to feel unwell and experienced itchy eyes, a rash which started on her face and generally felt tired. After her 1st visit to the doctor she was advised it was Eczema before then being advised is was an allergic reaction on the second visit. As the symptoms became worse she was admitted to hospital and placed on a drip whilst tests were carried out. More symptoms appeared and due to pain in her wrists she was referred to a rheumatologist where, upon the first examination, he advised her that, although they would need to test to confirm, he thought it was lupus.
And so now you run the Hibbs Lupus Trust, what made you set this up?
When we learnt that Viki had lupus we had never heard of it. Then you look at the internet and see all the horror stories and begin to panic. We don’t want other patients and families to be in the same position that we were. We have regular support meetings and are here to share our experience with others going through the same situation.
Clearly this is a very worthy cause. What will the money raised by the Lupus Lap go towards?
We are working closely with Mid Staffordshire NHS Foundation Trust to identify areas we can make improvements in the provision of facilities, support services and equipment not normally provided by the NHS Trust for the benefit of lupus patients. As well of the money raised from the Lupus Lap, the awareness this will bring is essentially as important. We aim to raise awareness so that people are familiar with the illness and its symptoms and also feel that there is support out there with someone at the end of the phone whenever they need it.
Thanks for a very enlightening chat John.
It is not too late for you to help John and Viki make a difference. To find out more and make a donation head to www.hibbslupustrust.org.