Living With Lupus: A Road Less Travelled By
Robert Frost once critiqued that it’s often best to be brave and break from the norm, examine what lies ahead although your destination may not be fully clear. Your destination may prove disappointing, dangerous but unless you venture in search of new opportunities you will forever be left thinking what if.
When Jessica O`Bryan was diagnosed with Lupus she met a similar fate to Frost. She thought long and hard about what her next step would be, if there was a next step. Would she sit back and tackle the illness personally or would she do something no other Lupus sufferer in Ireland sought to do. Thankfully for many Lupus sufferers around the country Jessica wasn’t one to settle down with Lupus, instead she aimed to stand up and be counted yet even Jessica can hardly believe the success of the group to date. “I cannot believe the response The Group has received. It seems that for many years people have lived silently with this condition and finally this Group is providing them with a voice” said Jessica, who was keen to praise the dedication and commitment of her fellow group members.
The mastermind behind Lupus Group Ireland is currently balancing her working life with another job, one some may think is a thankless task yet one that is making people stand up and take notice. In her role as chairperson of Lupus Group Ireland Jessica is active on a day to day basis on many platforms such as Facebook and Twitter while the official Lupus Group Ireland website is in the latter stages of development.
What started as one woman’s vision has turned into a thriving support system for Lupus sufferers the length and breadth of the country. The Facebook group was originally planned as the sole home of Lupus until Jessica realised the potential for growth and today Lupus Group Ireland is awaiting confirmation as an offical registered Irish charity.
The group are one of the most active groups in the country. Their cause is to raise awareness of Lupus and to have the disease included on the Long Term Illness Scheme, something that hasn’t been updated in over thirty years.
To date the Lupies as they are affectively known, have petitioned the Irish government over the matter and despite been knocked back they have vowed not to give up. Numerous TD`s and Senators from all over the country have raised their cause with the powers to be yet the Minister For Health Dr James Reilly refuses to budge.
The Ministers refusal to budge over the cause is quite ironic considering his campaign prior to his election. Speaking in the Seanad in July 2010 the now empowered Minister stated “I note the Minister has the power to exclude other groups by ministerial directive. If she made it clear these groups were excluded in the legislation, it would go some way to protecting the most vulnerable in society. Those I would like to see covered include those with a mental handicap or mental illness, even though this only applies to those under 16 in respect of the long-term illness card, phenylketonuria, cystic fibrosis, spina bifida hydrocephalus, diabetes mellitus, diabetes insipidus, haemophilia, cerebral palsy, epilepsy, multiple sclerosis, muscular dystrophy, Parkinsonism, conditions arising from thalidomide, acute leukaemia and high blood pressure. I also wish to include cancer care, asthma, congestive cardiac failure, chronic obstructive pulmonary disease, Crohn`s disease, lupus and Huntington’s disease. Many of these conditions are not even on the long-term illness scheme although they should be.”
Should they be?
Fast forward to 2012 and the Minister`s outlook on the Long Term Illness Scheme is radically different. “There are no plans to extend the list of eligible conditions.” Surprised? You shouldn’t be. How often does an Irish politician offer the sun, moon and the stars prior to been elected only to change his ways once he has reached an untouchable position? How ignorant can successive generations of politicians be? For failure to revise the Long Term Illness Scheme highlights everything that is wrong with Irish politics.
While Lupus Group Ireland may have been knocked back in their approach, their purpose and determination is unwavering. 1000 people have signed their petition and following their first official meeting they remain firm in their commitment to maintain pressure on the government until the desired outcome is achieved. Having received a processing number pending their confirmation as an official charity, the group are now officially beginning their fundraising initiatives in order to provide them with a budget from which they can launch and maintain their website, a service Ireland is crying out for. The Flora Women’s Mini Marathon in June will represent a huge milestone for this group of brave women.
While mainstream media seems quite happy to ignore the interests of Lupus Group Ireland there is no doubt that these women can overcome the obstacles placed in front of them. If there is any justice in the world the Minister for Health will return to his pre-electoral promises and grant Lupus Group Ireland their desires.
Remember the next time you are faced with such a decision, when all seems bleak and somewhat lost, take the road less travelled and make a difference.