The surgery is performed with a laser scalpel, and the papillomas growing both above, under, and on my vocal cords are burned. The operation is done under full anesthesia and takes about 1.5 to 2 hours each time. They don't cut anything outside the throat; with help of a laparoscope they can perform the surgery through the mouth. The only pain I suffer is after the operations, since I then have large, painful, burning wounds. But it goes away after the first 10 days and I'm then without pain. So it doesn't hurt to talk as many might believe. My voice is of course affected by the many operations and the papilloma itself. At times I don't have any voice at all and can only whisper, but often I have a voice that can be heard loud and often (yeah, I love to talk when I can). The voice isn't clear as an opera singer's voice would be. It's husky and I usually joke that I sound like I'm the female version of Rod Stewart. So far I've had about 120-130 operations on my vocal cords, and there is a lot more to come since there isn't any known cure yet. As we all know viruses aren't easy to beat unless our immune system can fight them off successfully. Not many people have this disease in the world so not much has been done in terms of serious research on different medications and surgical methods. In Sweden there are about 200 people suffering from this disease, and our population is about 9,000,000 (you do the math!). Of course there's a certain degree of knowledge about how to treat viruses - we all know of the evil Aids virus or the very annoying herpes virus - and the hope is that if a cure can be found for Aids and herpes it may also be effective on the virus I have. There's a lot of speculation on how one gets the virus and how its transmitted. The general view is that it is transmitted like herpes at birth and that you can carry the DNA for this virus without ever contracting it. The virus isn't transmitted via kissing or any other exchange of bodily fluids as with aids or herpes. The virus is only lethal if the papillomas start growing in the lungs, which in the worst cases can happen. It's a life-long disease and its activity can wax and wane over the years. Mostly its activity decreases with age, especially if it sets in at an early age. But there are 70 year old women and men that have this, with it being more or less active all their lives. It can also occur in middle age, so it's not necessarily a childhood or teenage disease. I suffer from the more aggressive version of this disease; the papilloma reappears at a very fast rate and I have to have operations several times a year. Since there is no cure for this, many doctors have experimented with medications that have shown more or less good results in halting the activity of the virus. One of those medications is Interferon which is given by injection 3 times a week. Interferon is a protein which our bodies produce in response to viral infection, and inhibits the replication of virus particles. Through the injections I get an extra dose of it. I've taken these shots since 1980 with pretty good results; I don't catch colds as easily as before, and a cold makes the virus more active since my own immune system is busy taking care of the cold and not the papilloma virus. Interferon is a very expensive drug, each shot costs about $38-40. But not everyone responds well to Interferon so there is actually no real known cure for this. We who have this disease hope that the research involved in finding a cure to all kinds of viruses will move rapidly so that our suffering can stop. One of my doctors told me that there is another way to treat the virus but it is not recommended since the effects of the treatment can be a lot worse than the actual virus. They have successfully radiated the virus, like in cancer treatment, and the virus has totally disappeared. However, after 20-25 years the patient will most likely succumb to cancer as a result of the radiation. So this treatment is not given to young people because they will get more problems later in life. By the time a sufferer reaches the age of 60-65 it is recommended to radiate the virus since the patients are less likely to suffer from long-term effects of cancer at that advanced age. A disease like this is not only a problem for me, as a sufferer. It affects everyone in my vicinity since there is always the threat of suffocation and I may have to be rushed to hospital quickly. My family, especially my mom and boyfriend in particular, have put their lives on hold to support and help me with various things. Anything from helping me to clean the house and do the laundry, to checking my health status regularly so they see the first signs of a possible emergency and can rush me to hospital. On the outside I look like any normal, healthy person. I carry my disease bravely and try not to let it affect my life too much. But that's hard to practice since it limits me in many ways. I can never make any plans for holidays or vacations since the disease develops fast and I can be rushed into hospital at very short notice. This also means that my family has to adjust to my situation because they can't leave me if they are not sure I'm OK and will be OK in the near future. At times I'm so weak that I can't leave my house. That means that my friends have to visit me all the time instead of me visiting them. That can be very frustrating and they usually get tired of that. It is also frustrating for my friends that at times I can't participate in all the fun that they want us to have. I can't go to a restaurant where there is a lot of smoke, I can't go to a cinema that is not completely clean from dust, I can't go outside if the air is too cold... etc, etc. So, in the end, the friends stop calling and all I have left is my family and the closest, most caring friends.
Links that might be of interest:
  
|