The Need For Awareness Is Not An April Fool’s Joke!

The beginning of April marks a lot of things. It is a time of transition as winter melts away. It is a time of refreshing rain showers. It is a time of renewal as flowers begin to bloom. It is a time of good fun as the month begins with a day of practical jokes and foolery. April is also the month of awareness for many worthy issues. It is autism awareness month. It is sexual assault awareness month. It is alcohol awareness month. It is stress awareness month and it is sarcoidosis awareness month.

April is a busy month.

I will be spending the month raising awareness for sarcoidosis because I have this disease and it sucks. Sarcoidosis is a rarely heard of disease, for which there is no known cause and no known cure. Minimal research dollars are spent in the search for the cause let alone the cure and, most people have never heard of it. What’s worse and truly demoralizing when you have this disease, is that many members of the medical profession don’t even have a good understanding what it is. When you do an internet search for sarcoidosis, it reads like a lottery winning disease, like it is no big deal, that if you had to have a chronic illness, having sarcoidosis is walk in the park.

It’s not. For many of us, sarcoidosis is more like walking through a thick forest of low hanging, half dead trees that are all about to come crashing down. Having sarcoidosis is life in a dubious state of confusion and misinformation. Having sarcoidosis is living in a constant state of being judged because of the unrelenting level of mystery and ignorance that surround this disease. The general public is ignorant about it but that is to be expected.  Surprisingly and perhaps more importantly, those in the healthcare community who have a misguided approach to managing the myriad of unpredictable symptoms that each patient might experience are often woefully out of their depth in providing aid and comfort those of us most in need and, sadly, many of them are arrogant in the face of their deficiency.

There are some reasons why sarcoidosis is misunderstood and one of them is that it is a disease that is incredibly individualized for each person who has it. There are many who have it that never even know they have it. They are asymptomatic and the disease never causes them a problem. They might find it incidentally while being examined for something else. These patients never need treatment for the disease and they never have a single medical problem despite their diagnosis. Next, there are the people who have an acute version of the disease. They might sustain some mild to moderate symptoms of the disease, a dry cough, unexplained fevers, some shortness of breath, fatigue, skin rashes or blurred vision, these being the most common symptoms. Patients who fall into the acute category, receive treatment to relieve the symptoms and never have another problem again.

Then there are the relapsers. These are the folks who receive treatment, do better, come off treatment, do fine for awhile and then flare again, maybe once or maybe over and over again. These folks may or may not sustain organ damage from the disease and life as a relapser can be incredibly frustrating because flares can be wildly unpredictable, extremely inconvenient and often painful. While the word remission is often used for relapsers, remission is a bit of a misnomer because sarcoidosis is often accompanied by other chronic problems like nerve damage, weakened tendons, sore muscles, unrelenting fatigue and joint pain, sometimes associated with sarcoidosis induced arthritis. So, while a patient can technically be in remission, or what is sometimes called an inactive phase of the sarcoidosis, the patient still suffers. It’s a chronic situation, despite the hope of word like remission.

Finally, there are the chronics. These are the patients who have sustained very serious medical problems from sarcoidosis and treatment is a constant. These are the people who absolutely have permanent organ damage. These are the people who cannot escape the challenges, pitfalls and frustrations of life with a debilitating disease. Sometimes these are the patients on organ transplant lists and sometimes these are the patients who die from this disease. Yes, people die from this disease. I have lost friends to this disease.

Another reason sarcoidosis is wildly misunderstood is that even within the medical community there are those who refer to it as an auto immune disease. It’s not. It is an inflammatory disease that involves an overactive immune response for reasons that are entirely unknown. When the immune system sets about to protect us, it causes inflammation as a way of healing but too much inflammation is bad for our bodies. What happens in sarcoidosis is that a person has an immune response to a real or imagined threat and the immune system flies into action to defend us from illness or injury. Once the threat, whatever it might have been, dissipates, the immune system does not stand down. It remains on high alert. As it does this, the sustained inflammation causes granulomas, a fancy word for clumps of cells. These granulomas on their own are not dangerous but when they begin to interfere with proper organ function, they cause damage to that organ. For some of us no damage is ever done, for others so much damage is done organs begin to fail.

Sarcoidosis is different than traditional auto immune diseases because the body is not attacking itself, instead the body thinks it is protecting itself when in fact, there is no reason for the immune system to be causing sustained inflammation. It is this inflammation that becomes potentially problematic with sarcoidosis. The reason the “off switch” for the immune systems breaks in sarcoidosis is not known. Nor is it known what actually causes the body to have such massive immune reaction in the first place. Believe it or not, there are many doctors who do not entirely understand this about the disease and this is maddening for many of us who have it. It’s important to be an educated patient but when you actually know more than your doctor, things get…complicated.

Just when you think you’ve got sarcoidosis figured out, don’t be fooled. While there are some commonly known symptoms of this disease, as described above, there are as many variations of these symptoms as there are people who have the disease. The trajectory of this disease is insanely different for every person who has it and how it will impact their life. While 90 plus percent of the people who have it, have lung involvement, it can impact any organ. For those with a more chronic version of the disease, more than one organ is usually involved.

There are no treatments for sarcoidosis designed to cure it. Treatment for sarcoidosis is for symptom management only and, the go to drug for sarcoidosis tends to be a high dose of prednisone, sometimes for long periods of time. This drug, while life saving in many situations, can also present new and unintended health issues such as excessive weight gain, high blood pressure, depression and other mood changes, sleep problems, stomach pain and bloating and other more serious medical problems like high blood sugar readings. There are other treatments, things like low doses of chemo therapy to help suppress the immune system. Immune suppressing treatments have their own side effects such as increased fatigue, potential liver damage, joint pain, nausea, mouth sores and more. The bottomline is, treatment for sarcoidosis is truly sometimes worse than the disease. Yet, sometimes it is a very necessary evil.

Finally, sarcoidosis is not a disease you can see…most of the time. The fact that sarcoidosis is an invisible disease and the fact that many of us who have it, who truly suffer with it, look good, just plain bewilders people who have never really ever been sick. The fact that we don’t look sick is even confusing for physicians who treat us. I’ve had more than one doctor comment on my appearance, completely dismissing my pain. Since we don’t look sick, how bad can it be? The invisible nature of this disease is yet another example of what makes it a confusing and misunderstood mystery.

Sarcoidosis awareness month may be starting on April Fool’s Day, but sarcoidosis is not a joke. It’s a very complex disease but it is also a rare disease and because it is a rare disease, it does not get the funding it needs to find its cause or a cure. This is why sarcoidosis awareness month is so very important. If we can raise awareness about the seriousness of this disease, about the devastation this disease can and does cause, if we can get those in the medical community who don’t take it seriously to have a better understanding of the consequences many of us suffer from living with it, maybe…just maybe…we can begin to get a step closer to the answers we deserve. We deserve to know how we got this disease and how to get rid of it…once and for all!