Being diagnosed with any disease can be scary. There are some that are obviously more notorious for their effects on a person – cancer, HIV/AIDS, etc. I’m not going to try and downplay any of the pain and suffering that people afflicted with those ailments experience.
Still’s Disease does not get a lot of attention. It is not a disease that can outright kill you or immediately change your life overnight (in most cases). There are, however, some very scary things associated with it.
Hepatic (or liver) Disease
The liver is an essential part of your body, one you cannot live without in some way. It cleans and filters the toxins out of your body as well as creates proteins and aiding in digestion (creating bile). There are a number of other tasks that this integral organ performs, but they are too many to list here. All in all, it is a fascinating organ.
The term ‘liver disease’ covers a number of different problems that can affect the liver – hepatitis, cancer, cirrhosis, and more. It is not quite clear what falls under this term when discussing Still’s Disease, but medicines taken for pain are also known to cause problems with the liver. It is important to try and take as little (over-the-counter) medication as possible in order to save your liver from serious problems later on. I will be the first to admit, however, that this is a very hard thing to keep in mind when one is in pain. In the past few months, I have tried to chronicle when I know I am taking too much medication somewhere, just in case. If you are someone with this same problem, it is not a bad idea to follow suit.
Splenomegaly (Spleen Enlargement)
When one looks at the other possible causes, it is easy to see why Still’s Disease would be included on that list. While this seems to be a painful problem, treatment involves treating the cause of this symptom and not the symptom itself. If the spleen cannot be saved, it can be removed. However, because of the spleen’s function regarding the immune system, this can cause problems down the road.
Pericarditis
The pericardium is the name of the sac that contains the heart. This is mainly exhibited as chest pain, but can also be misdiagnosed as a heart attack. If this is not treated quickly, the problem can lead to congestive heart failure. Generally, steroids and antibiotics are used to treat this malady, but it can also require other medicines and surgery.
Pleuritis
The pleural cavity is the one surrounding the lungs. If you’ve ever had the feeling that you breathed in too deep and caused pain in your chest, this could be the culprit. Coughing, shortness of breath, and rapid breathing (as well as turning a nice shade of blue) are the main symptoms of this problem. Normally, over-the-counter medicines are used as treatment, but doctors can also remove any fluid on the lungs and give a patient steroids if they need to. If the condition isn’t treated, other respiratory problems can occur. And I wonder why I have bronchitis…
Other problems:
- The swelling of the kidneys and other related problems
- Endocarditis, or the inflammation of the inner layer of the heart
- Atherosclerosis (more prone)
- Increased tear production (generally happens one eye at a time)
- Inflammation of the outer white part of the eye (scleritis) can cause blindness; so can uveitis, the inflammation of the middle layers of the eye (I had this as a youngster, misdiagnosed as pink eye because the rash was present on my eyeball)
- Anemia. Yes, we’ve talked about it before and it doesn’t seem to be a huge problem. However, behavioral problems in young people can be explained by this disease. It can also affect the heart and tolerance to cold. Living in Wisconsin with anemia sucks.
- Damage to the nerves and nervous system (peripheral neuropathy and mononeuritis multiplex)
- Atlantoaxial subluxation, or basically a fracture or other problem involving the first few vertebrae in the neck
- The above two problems can also lead to quadriplegia
- Osteoporosis (more prone)
- Lymphoma (more prone)
- And the piece de resistance, swelling of the brain. This can lead to dementia as well as, oh, death. Yeah, nice right?
So now you know a little more about the problems facing people with Still’s Disease. There isn’t just a fear of ending up in a wheelchair or being unable to move one’s fingers normally. As one can imagine, staring all these issues in the face every day is not pretty or fun. Even if someone can come to terms with the fact that these things are a possibility, trying to explain all of the above to people you care about can be pretty scary.
I've had Still's Disease for 17 1/2 yrs. now, and had some of the problems you've mentioned here. Also within the first 4 1/2 yrs. I've had to have my first hip replacement, second followed 6 months later. 7 1/2 yrs. into it I've had a shoulder replacement, and several minor surgeries in comparison to the mentioned ones.
Still, I did not know about half the problems that you are talking about…and I thought it was scary enough what I had been going through…yiiiikkkeesss.
Thanks for putting this out there for us others to read.
Gosh, I'm sorry that things have been so hard for you. Stay strong hun.
It is definitely scary. I didn't even know some of the things that could happen before my boyfriend wanted to know how bad things could be. And to think that the worst thing to me used to be ending up in a wheelchair…
I'm just thankful that there is so much more information about this disease on the internet. When I was first diagnosed in 1995/1996, there was virtually nothing.
wow im glad i dont have this!:)
I also have stills and all I can say is WOW thanks for writing this as it helps in getting the info out there. I can say living with this stills stuff as you said in not fun. I have had it now for about ten years and well it did almost kill me at the start in a few ways. Now moving on I can also say because it slowed this type A person down a lot I have also found joy in a lot of the simple things in life that I just some how never noticed before in my run with the rat race.
So thank you again and to any one other reading this well life can go one you just have to adjust and adapt to a new way of thinking and doing that’s all but you will also learn that when you do not look sick or disabled others will have a hard time understanding that you are that sick and that is one of the hard parts of dealing with this illness others saying “But you do not look sick” I ask them then so tell me what dose sick look like? What dose disabled look like? It never fails to make them stop and think and that is a good thing.
The redneck
Marty
Hey Marty,
I know exactly what you mean! I have always been a type A and having this disease has really forced me to take things slower. But it is really wonderful to see the kinds of beautiful things that I was missing before.
I hope you're feeling well!