Recently, I heard a politician on television talking about his daughter and her epilepsy. He was discussing his wife and her organization to raise money for curing epilepsy. It sounded like a website to go on and see if I could learn anything. I am always open to new ideas and treatments that could possibly help Parker. I figure that information is power and power is what you need to combat any disability or illness. I went on the website and was hit with an article right off that completely upset me. It simply said that sudden death from epilepsy and the VNS was questioned. When I clicked on the link it took me to an incredibly short article that was written by a person in England and it said almost nothing. The writer was just questioning the wisdom of our FDA to approve the device when it may not be able to monitor if some people die from it rather than from epilepsy. The article presented no evidence for the reason it was questioning the VNS and I have to wonder why this article was written in the first place. The only thing I can ascertain from this is that someone doesn’t want people to get VNS’s for some reason. I also found it odd that with no presentation of evidence to warrant a concern, this group called CURE voices its agreement with the article about the VNS as well.
I must say that after reading this article and the fact that the group and this writer were trying to scare people away from getting a VNS, scared me to death. I was so upset that I immediately logged off the site and decided they were just idiots without any knowledge and pretending to have knowledge. I also called Parker’s doctor and asked some questions about VNS and sudden death. They had not heard of any such cases and in fact said that all they have heard is positive success cases. I have been through a slew of neurologists and the bulk of them were CRAP. The ones that were any good were overworked and didn’t have the time for us. This particular doctor is good, really good. I think I know a good doctor when I see one. I have seen the worst of them and have learned to trust my gut. It almost never steers me wrong. My gut, from our first meeting, was that we finally found a winner. I trust her and I know in my gut that she would never have suggested the VNS if she weren’t sure of it’s value and safety.
This call definitely calmed my worries and I decided to go on the site again and read more. I wanted to know who was sponsoring the group CURE and see if I could do some background work. I just felt a need to understand why a group that supposedly stands for helping people with epilepsy would post such an article front and center on the home page. Anyone with a VNS would obviously get quite upset at the prospect of it causing more of a chance of death. Anyone thinking of getting a VNS might go running scared and not get one. I have to say that the VNS has been the best treatment for Parker and everyone I have spoken with has the same to say about it. We didn’t go lightly into getting the VNS. We trust our doctor, but, we did our own homework too. We researched as much as possible and only found good things to be had. Of course, with anything there are some problems, but, the positives way outweighed the negatives.
So, since they raised this warning flag without anything to back it up, I have to ask if the people running this group have something to do with the pharmaceutical companies. Is the goal to help keep the drug companies set up with customers at the expense of the patient’s quality of life? The only reason I can think of for someone to discount the VNS as a treatment on a site aimed at treatment and ultimately a cure, is that the VNS doesn’t fit their plan. If more and more people get a VNS and the VNS continues to work as well as it has thus far, it could possibly negate the need for all the seizure drugs. The only ones to get hurt by this cure are the drug companies. If that is the case, then shame on these people and this group; and shame on them for exploiting people with epilepsy to make money.
I was going to talk about the people that are in charge of the group and the politicians that have helped the group make money, but I decided to leave that alone. When politics plays any part of a discussion, one group or the other will stop listening and get their collective backs up and that is not the point here. I just wanted to caution anyone with a disability and especially those with epilepsy not to believe everything you read or hear. A lot of information out there is great and reliable; some, unfortunately, is presented in a manner to further a cause rather than help. I believe for this group, the latter is the case.