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I do not remember where it was. I do not remember the woman who told me. It was just another horror story, one of the seemingly endless stories that family members of people with epilepsy have told me in recent months. But it's the one that has torn me the most.
His son had epilepsy. She heard him in his room where he was sleeping, convulsing. She rushed to be with her child and, when the crisis stopped, she sank into her bed and wrapped her in his arms. She wanted to comfort him, like any mother, to be there when he regained consciousness, to appease his fears. She woke the next morning with her son still in his arms, seemingly asleep.
The boy was dead. He had passed through the night without noise or movement. One second, he slept, and the next, without warning, he was gone.
A son dies; His parents had no idea that he was running a risk
His parents had no idea that his epilepsy could be fatal. Their doctor never talked about it.
It's the same for the family I met in Colorado, whose son died at the university and was not discovered until two days ago. It was the same with a young man I mentored, convincing him that even with epilepsy, he could pursue his career as a sports broadcaster on television. Shortly after realizing his dream, epilepsy killed him in his sleep. His doctor had not told him that could happen, and neither did I.
At least I had an excuse. Even though I have a type of epilepsy that makes me more likely to die, no one has told me either. I could not share information with the child I had sponsored while I did not know it myself. In that, I was like countless other people with epilepsy and their families that their neurologists have hidden.
SUDEP, the most common killer of epilepsy
All of these people have died from SUDEP – unexpected sudden death related to epilepsy – one of the many ways that epilepsy kills. Another is epileptic status, a single seizure or multiple seizures that last more than five minutes; between 10 and 30% of people with epileptic status die within 30 days.
Then there is suicide; people with epilepsy are five times more likely to commit suicide than the general population. Epilepsy directly related to death is a list of causes of death: aspiration pneumonia, drowning during a seizure, car accidents, falls, burns and cardiovascular problems exacerbated by anticonvulsants.
But the SUDEP is considered the most common killer associated with epilepsy. This is at least the sixth neurological cause of death, but the second in number of lost years of potential life after only one stroke. Taken together, these data show that people are killed by SUDEP much earlier than most other neurological causes of death.
Lack of resources, lack of research, lack of knowledge about epilepsy deaths
Notice how the previous paragraph used the phrases "presumed" and "at least". I hate these expressions because they reflect not only an infuriating aspect of epilepsy, but also the helplessness of the community that suffers from the disease.
Although epilepsy causes significant loss of life, although the number of people with the disease is greater than that of Alzheimer's disease, autism and multiple sclerosis, the money collected for research and advocacy is comparatively derisory. The numbers are "supposed to be" because the limited resources available for epilepsy make it difficult to fund comprehensive studies on mortality. And the consequences are that no one knows the actual death rate for sure.
"The inability to accurately quantify epilepsy-related deaths is a major obstacle to progress, as are our difficulties in comparing study outcomes with different methods," writes Orrin Devinsky, MD, one of the most prominent researchers in epilepsy, in the newspaper Neurology. In his article, Dr. Devinsky describes how two small research projects on mortality by SUDEP showed results with a difference of 250 times in the results. The reason? A Finnish study is based on clinical records and detailed case studies; the other, originally from Ohio, used findings in death certificates.
Death certificates often fail to make epilepsy a cause of death
Forensic scientists, unfamiliar with the sudden cessation of life that may occur with epilepsy, rarely use PEDUU as the cause of death. For example, a 37-year-old man with generalized epileptic seizures since the age of 12 has died while sleeping, which is common with SUDEP. The medical examiner discovered a slight thickening of the coronary artery and used coronary artery disease as the cause of death. Epilepsy was not even mentioned in the death certificate.
The same thing often happens when people contract pneumonia after involuntarily inhaling material into their mouths during a seizure and then they die. Epilepsy is rarely cited as a contributing factor to death; pneumonia is mentioned instead.
If you do not ask about PEDS, they will not tell you
Neurologists and epileptologists who – by arrogance, ignorance or fear – refuse to tell all their patients the risks of death related to epilepsy further aggravate the situation. For some reason, pediatric oncologists can talk about mortality even in small children, but epilepsy specialists do not even talk about risk to adults evenly.
According to a report by Journal of Neurology, Neurosurgery and PsychiatryIn the UK, only 5% of neurologists talk about the disease at the starting point of their patients with epilepsy. Only 26% say to the majority of their patients, 61% inform a few and 7.5% remain completely silent with all patients. And even with these pathetic results, the doctors who informed their patients said that most of the time it was only because the patients had asked about the SUDEP.
Although no studies have been conducted to determine the number of neurologists informing people with epilepsy of all the risks of death associated with the disease, the numbers are certainly smaller.
Neurologists say they do not want to scare patients …
Why do not they say? I've talked to a number of neurologists at galas for charities for epilepsy and at the annual conference of epilepsy physicians, and the answers are often the same: they do not want to scare patients and just want to tell those who they consider the highest risk of death.
But a person with epilepsy can die from post-traumatic dieback syndrome even after having one or two convulsions. And since I have never met a family member of SUDEP who has been informed by a physician of this possibility, the ability of neurologists to identify the most at-risk individuals is obviously mediocre.
Who is a good example of a person at risk for PEDSE who did not know it? Me. Not only did I have no idea of the SUDEP that existed until recently, but doctors and Epilepsy Foundation officials have told me in recent weeks that I've probably survived this. potential killer. After having convulsions several years ago, I stopped breathing while I was still unconscious. I made no sound to suggest that there was a problem, but someone noticed that I was becoming blue. After being alerted, another person mocked me aggressively and then slapped me several times. I took the breath again.
But they deprive us of the opportunity to take precautions
To point out to a patient this risk is literally a choice of life or death made by the doctor, often without the intervention of the patient. If those of us who suffer from epilepsy know the risks, we can take precautions that we could not otherwise.
"Most SUDEPs happen in sleep when someone is alone and unsupervised," writes Devinsky. "Sharing a room or a bed or using a nightly audiovisual surveillance can reduce the risks, suggesting that a close person to provide basic assistance during or after a crisis can save lives. The devices can alert family members and caregivers that a seizure is underway so that they can administer rescue medication, roll the person on their side, or encourage the person to improve their breathing and excitement after a seizure. . We must inform patients and their families of the risk of death. "
The family members I met and whose loved one has died of epilepsy are all in agreement.
Family members want to know that their loved ones could die
The Noweteski family, who defeated his 24-year-old son Russell by the SUDEP, wrote an open letter to health professionals that the Foundation for Epilepsy posted on his website, urging doctors to no longer keeping the secret on the SUDEP. Russell has had eight crises in seven years. The doctors regarded him as controlled. Then, while he was about to finish his studies, he was found dead on the floor of his room.
"Why did not we say it could happen?" Says the open letter, which was signed by the whole family. "Can you imagine the heartbreaking feeling of wondering if there was anything more that we could have done to prevent this? How can we accept the idea of not having succeeded in protecting our son by any means possible? If Russell had understood what he was really facing, would he have been more diligent with his meals, medications, and sleep? Would that have made a difference?
"If even one of the doctors who cared for him had told us about the SUDEP, would we have celebrated his 25th birthday this week rather than grieving for the sixth anniversary of his sudden and unexpected death?" Says the letter. "Who knows, but it hurts so much to ask questions.
The story is the same in other letters posted on the website of the Epilepsy Foundation.
These parents first heard about SUDEP at their children's funerals
Kristan Bagley Jones said that she had learned about the existence of SEDEP at the funeral of her son Evan, who died of epilepsy at the age of 19. "I do not know why his doctors have not taught me what SUDEP is," she wrote. "Maybe they thought that Evan or I could not handle this information? I do not know the answer to this question, but I know without a doubt in my heart that Evan would have liked to know his risks. "
Another young man, John Paul Popovich, also died at age 19, while he was home visiting a university. His parents, John and Karen Popovich, also heard about SUDEP for the first time at their son's funeral.
"I heard about the many other SUDEP tragedies that hit innocent families and changed their lives forever, as it changed our lives," write the Popovitches in a letter posted on the site. "It seems like a common denominator for each of these stories is that the family has never heard of SUDEP and / or that its doctor has ever mentioned it."
Bereaved families demand a change
A story I've often heard about people who dropped their anticonvulsants at the suggestion of a neurologist without being warned of the risk of ESDP, before dying shortly thereafter.
Dakota Jankowski died at age 16 from epilepsy. Her mother, Kellie Jankowski, has also posted an open letter to doctors on the Epilepsy Foundation website. "Not once, when she met the criteria for eligibility for treatment, SUDEP was never mentioned to us," she writes. "If this had been the case, would we have changed our minds about withdrawing drugs? I am not sure, but this right has been withdrawn.
"From what I understand, many health professionals do not discuss PEDS with their parents or their patients. Some are afraid that it will scare parents. How can a parent make the right decisions when he does not have the proper facts? Would you like that right to be taken away and you lose a child? "
Jankowski then adds a request. "Please provide all the facts to people with epilepsy. Allow them to make the choices they want based on ALL information provided. It's your responsibility as a caregiver. "
A glimmer of hope in an automated SUDEP risk assessment tool
It is amazing that many doctors do not hear these arguments or ignore them. The resistance of many physicians to talk about the risk of death, or even to assess its risk for a particular patient, prompted a research group including Greenwich Biosciences to begin developing a computer program for pediatric neurologists called CHICA (Child Health Improvement through to computer automation).
The system provides a questionnaire to parents, which is provided on a computer tablet. If the answers they provide suggest an increased possibility of UTAs, the computer asks the doctor to talk about them.
My message to neurologists: How dare you?
I have struggled with strength with this column. I cried, I let myself go and swallowed my fury. So many children, adults and friends – all promising, fighting for a busy life – have not had the chance to take precautions, to flee or to escape. 39 be saved because the neurologists have chosen to say nothing. Although CHICA is a breakthrough, the idea that doctors need to be invited by a computer mentioning the risks of death is horrible.
For neurologists, when I say that, I echo the words I've heard all over the country from people who have lost loved ones:
How dare you? How dare you decide for us if we should know about the risks of death? How dare you hide your own uneasiness about discussing the PEDSU and other potential epilepsy killers by claiming that you keep silent to our advantage? How dare you?
These are our lives, not yours. Tomorrow, someone will die of SUDEP. And when their loved ones discover that you have never told them the risk, they will condemn you with all their might, like so many families before them.
Say, for God's sake.
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