It is the 21st century and we are still faced with horrible diseases. Thankfully, we as a whole have managed to develop cures for some, but as for others, a cure is yet to be found. In October 2013, I spoke with Jessica O’Bryan, chairperson of the auto-immune disease group, Lupus Group Ireland. She is a lupus patient and she set up the Lupus Group Ireland organisation hoping to bring awareness to the public about the unfamiliar disease.
- Photo credit: Jessica O’Bryan
Lupus is one of the hardest diseases to diagnose as there are so many different symptoms. Anything from chest pains to migraines could be a sign of lupus. Ms O’Bryan defined lupus as “an auto-immune disease that attacks the body’s healthy tissue”. The immune system is there to fight off infection but lupus sees your body as an infection, so basically your immune system gets “confused”.
Because lupus has so many different symptoms, it is often misdiagnosed. It is known as “the great imitator” as it “mimics” so many other conditions, said Ms O’Bryan. Such misdiagnosis includes MS and cancer. Because it is often misdiagnosed as these two serious illnesses just heightens how bad lupus can be.
It is a serious illness that has very little research and very few answers. Doctors “think” it could be triggered by a virus, but recent research shows that they are leaning towards the hormone oestrogen, seeing as nine out of 10 patients are female. They also think it could be genetics, meaning it is passed down the family line. The Lupus Group Ireland organisation is currently trying to fund the research in Ireland, as it is desperately needed.
It seems the research has started only in recent years as “about 30 years ago lupus was seen as a terminal condition, so if you were diagnosed, you were given about three/four years to live”. Ms O’Bryan explained that “some of the girls in the group were given 10 years to live and they have by-passed it, which is brilliant because of the new research and medication out there”. The research “has come on but it is relatively new when you compare it to the likes of MS. You don’t hear a lot about lupus research.”
Lupus is just as serious as cancer and MS but it lacks the information because lupus “is a mystery and it is difficult to pinpoint it”. The lack of research is a big issue in this country as there is no exact number of how many patients there are. According to the Royal College Surgeons of Ireland 1,500 suffer with lupus in Ireland but there is no real figure because Ireland does not even have a database for lupus. That just goes to show how far behind we are on the research in Ireland.
There is currently no cure for lupus, so therefore it is a long-term illness. Patients in Ireland are “not issued a medical card, and it is not recognised as a long-term illness”. The Lupus Group Ireland team tried to get it on the long-term illness scheme but it is very limited to certain illnesses. Only certain types of leukaemia and diabetes are on it. As for the medical card, only people with income issues are issued one. ”It would be very hard to get lupus on the medical-card system now as they are currently being assessed and taken from some people”.
Lupus Group Ireland is a support group that was set up in 2011. It is an online support and advice networking, allowing all involved to connect and interact with each other. October is the lupus-awareness month and Ms O’Bryan and her team set up meetings around the country where anyone who wants advice or information could get together. The group held competitions and events like skydiving which was all in aid of the awareness group. The awareness is not just about the month of October, so these meetings are going to be held all year around. The group are now celebrating the release of the Living with Lupus book which was edited by Irish News Review editor Glenn Dowd The book contains 20 members’ stories of their journey to diagnoses and how they coped after the diagnoses. It gives the different perspectives of the lupus patients and of their family members. It describes the difficulty some of the patients faced.
The stories go from one extreme to the other. One describes the death of a girl’s sister as she battled lupus for years and another explains Emma’s happy outcome after an extremely difficult time in hospital. Emma was given 24 hours to live and in that time all of her organs shut down and there was no hope left for her. Four years later, Emma is now married with a family and has a full-time job. She was told she would never be able to have kids and today she does. Ms O’Bryan said that the idea of the book is “more of an awareness and educational element than a fund-raising one”. People are so unaware of lupus so this is definitely “needed”. The group have plans to send it into radio stations and hospitals purely for educational reasons. This way doctors will be fully aware of lupus (as some are not) and they will be able to identify some symptoms as lupus symptoms. The doctors with lupus patients will also be able to have a better understanding.
There was a recent interview on an American show where Judge Judy made hurtful comments about lupus, leaving all patients outraged. She stated that her daughter-in-law had lupus and that her condition only meant that she was ”tired sometimes”. This made the group write to Judge Judy looking for an apology and informing her of what lupus really is. Ms O’Bryan said the response from the public was “incredible” as many people online shared the letter that was sent. This meant that more and more people became interested as Judge Judy is in the public eye and because it was a negative comment about an illness made people want to know more about the illness. “It’s people who say comments like that that need to educate themselves and read the book so they are fully aware of the condition. It’s not right to make a comment about something they are unaware of.” People in the public eye seem to be key to making people aware of different conditions, so in a small way, it was a good thing Judge Judy said what she said as it got the public discussing the illness.
Awareness for lupus is absolutely crucial right now. The more awareness in Ireland means there will finally be a database. This is the main hope for the group this year. Once there is a database there will be more research done, as there will be enough information to work off.
It is currently the group that is funding the research. There is very little Government funding going into the research on lupus. There is so much to be done about the auto-immune illness in Ireland. The best place to start is by educating yourself and being aware. Hopefully, the rest will soon follow.