Since I promised Tanya that I would write 365 blog posts that would help bring awareness of Rheumatoid Autoimmune Disease (RAD) and to help promote the Rheumatoid Patient Foundation I have been attempting to be a little more aware of things that happen in our daily lives so I can be a little more diverse in my writings. While it would certainly be quite cute if all I did was write about our daily lives and how much fun we have together, it would not really do much to educate people about RAD.
Now, before I get started I want to apologize in advance as I know I am going to go off on tangents at times; in fact, this particular post is only part one of at least two parts. I usually write these things in my head before I sit down to my laptop, and there is a possibility that it will be a three part article. I will attempt to tie the tangents together so you will not leave confused, but perhaps will understand the frustration those with RAD deal with on a regular basis. I am afraid some of this frustration may be self imposed.
Up until a few weeks ago, I always said Tanya had Rheumatoid Arthritis (RA) because that is what she always called it. RA is not a very good description of the illness and gives a lot of false impressions; the primary one being that RA is just some form of arthritis. People that have arthritis or have a family member that had or has arthritis are always quick to mention some suggestion that “always worked for them.” Then I learned of the new name, Rheumatoid Autoimmune Disease. This was a name that said it all. I decided that I would make a concerted effort to discontinue with the commonly used RA and instead use RAD when discussing Tanya’s situation. I have been working on getting Tanya to stop using it as well when she talks to people, but it is difficult for a few reasons. Number one, she has been using the diagnosis of Rheumatoid Arthritis for years, so it is easier; and a lot of the time she is too wiped out to remember. She says that RA is what people know. The problem is, people do not know. They think they know, but they are pretty off-based for the most part.
Like I said, Tanya wants me to bring awareness to the Rheumatoid Patient Foundation (RPF), but even on their page they state they are “the only charity just for RA.” If they are going to represent people living with RAD, they really need to be at the forefront of promoting the idea that RAD is not arthritis. To their credit, they are conducting a survey of RAD patients and one of the questions they ask is, “What would you prefer as a name for RA?” They precede the question with, “Let’s think for a minute about how others understand RA.” The default answer is to leave it alone and keep it as RA. The other options are to remove the word “arthritis” or call it “Rheumatoid Disease.” There is an “Other” option, and if you suffer from RAD, read this post and find yourself taking the survey, I suggest you write in Rheumatoid Autoimmune Disease. Allow me to offer why.
The default answer of leave it as RA is not accomplishing anything. The medical community for the most part does not even know what it means. Earlier this week Tanya attempted to go to a new dentist. They were so clueless with regards to what her medical condition is that they refused to help her until they received a medical release on medication recommendations from her doctor in Indiana. Anyone with RAD that has told someone they have RA has to have experienced the assumption that it was just arthritis.
The second option of simply removing the word arthritis from RA and call it Rheumatoid does not make any sense. The only thing “Rheumatoid” conjures up might be rheumatism, and if you look up the definition of rheumatism you will think it is merely sore joints or arthritis. The name still does not convey the severity of the disease.
Option three, calling it Rheumatoid Disease is close, but it lacks something. If I heard Rheumatoid Disease I am not sure what would immediately pop into mind. Granted, arthritis does not come to mind, but I might think it was something I could “catch.” I suppose I would guess that it was a disease that made joints sore, but unless I am only getting part of the story, RAD is so much more than sore joints.
Rheumatoid Autoimmune Disease is the best name I have heard to date. Rheumatoid tells us that it concentrates on bones and joints, but the “autoimmune disease” really explains what is happening to the person. Now one can understand that we are not talking about stiff fingers on a December morning, but rather the fact that the cold you caught that December morning might take you a month to recover from. Granted, part of this may be caused by the drugs you are forced to take, but that would be splitting hairs. The fact of the matter is that what has been known as RA up until recently is an autoimmune disease, and it should be in the name so people know what they are dealing with. There is noting about Rheumatoid Autoimmune Disease that suggests arthritis.
This is a good segue to bringing Burzynski into the topic. Now, let me begin this part of the post by assuring you I am not a conspiracy theorist. In fact, I am probably a natural skeptic when it comes to conspiracy theories. I had heard Burzynski’s name mentioned over the years, but I never paid a lot of attention as I figured he was just another one of these guys that had the magic cure for everything and the man was merely holding him down. A couple of weeks ago, Tanya sent me a link to a YouTube video. I watched about 5 minutes of it and turned it off; again figuring it was more propaganda. Somehow, I had managed to add the movie to my Netflix queue, and it arrived a couple nights ago. I almost turned it off, but Tanya had watched it and wanted my opinion, so I watched it.
To give you a brief rundown, Dr. Stanislaw Burzynski is a medical doctor and PhD biochemist that discovered gene-targeted cancer medicines called Antineoplastons. Since his discovery was not FDA approved, he had patients come to Texas, where he practiced medicine. Long story short, the guy came up with a cure for cancer. Not just breast cancer, or skin cancer or colon cancer, but apparently these Antineoplastons actually cured all types of cancer. He even took on the most fatal types of cancers and had something like a 25% or more success rate, when standard treatments of chemo just ended up depleting the patient’s bank account before killing them.
Apparently the drug companies were not happy with the fact that he was able to provide help to people and they were losing their cut of the pie and were powerless to do anything about it since Texas law allowed him to do what he was doing. Eventually, they got the law changed and started taking him to court. They took him to court several times, lost every time, and did not stop. In the meantime, the FDA was forced into giving him a grant and using his Antineoplastons in authorized testing. Even thought the FDA does not argue that his medicine works, they still want to prosecute him for testing without their permission. It is pretty convoluted and I am not here to review the movie, so I will just encourage you to watch it.
So, what does this have to do with RAD? The Rheumatoid Patient Foundation website states, “We believe that a cure for RA will be found and we will not allow our children to have the same likelihood of suffering that we had. We support organizations and individuals who work toward a cure for RA.” After watching the Burzynski movie, I was left wondering what the chances are of a cure ever being released to the public. Like Chris Rock says in ’Bigger And Blacker’; ” . . . there ain’t no money in the cure. The money’s in the medicine. That’s how you get paid, on the comeback. That’s how a drug dealer makes his money, on the comeback.”
Dr. Burzynski is being persecuted for one reason. Money. If Antineoplastons are approved for public use, the large pharmaceutical companies are going to be out of a lot of money. Burzynski holds the patent to Antineoplastons. Everyone knows that chemotherapy is a suckers bet. Very rarely have I heard of someone living a normal life after chemo. Most of the time, the chemo is what kills you. But I digress. The point is, after watching the Burzynski movie I have to wonder, if someone actually has a cure for RAD, would we even know about it? Would the pharmaceutical companies allow it? I have my doubts.
One of the drugs Tanya uses is Methotrexate. Methotrexate was discovered in 1947 and was approved for treating RAD in 1988. That is almost 25 years ago. I find it very hard to believe that in 25 years no one has come up with a better solution than Methotrexate with all of its terrible side-effects. This leads me to South Park.
Why South Park? Well, a couple nights ago there was an episode about stem cell research. I will discuss this in more detail in my next article.