Intractable Refractory Epilepsy (IRE) is a diagnosis, made only after all available treatments have been tried and all have failed – the person continues to suffer from seizure activity. The amount and frequency of seizures will differ from one person to another.
In any case though, life is drastically different for people with this diagnosis than the average person realizes. While it is hard to wrap one's mind around the effects of intractable refractory epilepsy, it is even more difficult to comprehend the full impact this diagnosis has on daily life.
The person with intractable refractory epilepsy will never:
- Be able to drive a motor vehicle. Most states require a person be seizure free a minimum of six month. This is verified by written report from the person's doctor for obvious reasons. Motorcycles are strictly off limits. Even a go-cart can be deadly for someone with IRE.
- Be able to seek or maintain gainful employment in most industries that require – the operation of any machinery, sharp utensils, handling of glass, hot liquids, precision of touch, abstract thinking, climbing. Or involve strong odors, flashing lights, sharp or sudden noise, extreme temperatures, the list looks to be endless. Even specifically jobs developed and aimed towards the handicapped will most often preclude any opportunities for those with a diagnosis of this type epilepsy.
Imagine never being able to take a bath, unless someone is right next to you. Nor can you take a shower in privacy. Never going on a walk, unless accompanied by a companion. Even visiting amusement parks can be a seizure trigger. No rides that have sudden movements or move too fast, too high, too loud or flashing lights. Snow or water skiing are big no-nos without having someone in tandem. Riding a bike is even dangerous for people with intractable refractory epilepsy.
Cooking is dangerous for obvious and not so obvious reasons: danger of hot oils or food, heat and fires, blenders and mixers, knives, glassware and more. Whether dropping these items, falling upon these items, or flinging these items during a seizure; all possess the potential for deadly consequences – or at the least, disfiguring and maiming consequences.
Even in the privacy of their own rooms, there is no privacy. Someone is either watching or at the least, listening at all times. Sporting events, watching movies, even walking can be a life threatening danger for people with this diagnosis.
For women diagnosed with this condition, the possibility or potential for giving birth is next to none. Many are on volatile medications, some of which cause birth defects. Even removing or barring those risks, there remains high risk and low probability for carrying to full term due to hormonal fluctuations. Changes in hormone levels often trigger seizure onslaughts.
Sexual relationships are even a 'stretch of the imagination' for women and men with this diagnosis. Stimulation and arousal, changes in blood pressure and endorphins which trigger emotional reactions cause chemical changes in the body, thus causing changes in brain activity. All of which can trigger seizure activity.
Imagine for a moment … being dependent on another person for almost every need you might have. While they are not alone in their circumstances, their special needs tend to be overlooked and under funded. Accommodations must be made for the immobile person which requires wheelchairs, walkers and so forth. But, for these individuals, the gaps and gaping cracks in services, considerations, awareness and legal recourse are the equivalent of trying to cross oceans without a boat or so much as a life preserver.
To fully grasp the reality of this diagnosis is impossible for anyone who has not deal with it personally. But, to get a better idea of what these people face I suggest the following :
Spend just one day trying to function under the shadow of a companion. Whether it's your morning shower or simply eating breakfast. What about getting out of the house and going somewhere? Did you remember to carry your medical information with you? How about some extra clothes? And odor sealing bag for soiled clothes, if necessary. Yes, this is also a reality for people with this diagnosis.
Now, imagine again – you are in the store shopping one moment, then the next thing you know, you are lying on the floor [most likely with soiled clothes] and people are standing over you. You hear them speaking, but the words make no sense. You try to speak back, but only garbled syllables come out of your mouth. At first, you are trying to figure out where you are or what you were doing. Slowly it dawns on you what must have just happened – you had a seizure. If this is not disturbing enough, you must now make your way to the public restroom and clean yourself up. Aware of all the onlookers and 'calls' for 'cleanup' might also be heard over the PA system. Making a quiet or discrete exit is impossible.
People with IRE will not even have the benefit of leaving under the cover of medical assistance [ambulance]. You see, with this diagnosis, more often than not, it is up to the caregiver accompanying them to attend their medical needs. Calling an ambulance every time they have a seizure is not only impractical, but is most often not considered a 'covered' medical emergency.
Unlike all other seizure disorders, regular seizures are anticipated and considered 'normal' for the person with this diagnosis. Although there are trials going on that hold some promise, the person with IRE can only live each day to the utmost until a cure is found.
I hope this glimmer of insight has given you some idea of what a person with intractable refractory epilepsy deals with on a day to day basis, and over their life times.