Growing up is weird. The clichéd phrase about women “having it all” sounds like an annoying way to market a new pink-hued tampon to women, but you do find the older you get that “having it all” becomes harder and harder.
As many rare disease sufferers know, sometimes the key symptom that leads to a diagnosis may be mundane or bizarre. Whether you are healthy or chronically ill, daily life is full of other concerns to distract you from the seemingly harmless quirks of your body. Many of these strange ailments are completely benign or explained by something you had not considered, but some may be a message from your body that something is wrong.
Keep in mind that most of these symptoms may occur periodically in any person’s life and are easily explained by other causes. If your symptom becomes severe, seek medical attention immediately. If you are experiencing other health issues, however, you may want to mention your strange symptom to your doctor. It could be another clue in finding the right diagnosis.
Lupus: The Basics
Inside nearly every human body, there exists a vast expanse of cells that fight infection. Like a tiny army, it descends upon foreign invaders and swiftly eliminates the threat. It most cases, it’s a system that works well. In some cases, however, a significant problem arises.
Lupus, occurs when the human immune system destroys infection as well as health tissue and organs. As a result, patients will experience ongoing pain, inflammation, and malfunction throughout the body (Understanding, 2015).
One of the most distinct symptoms of lupus is a persistent rash across the nose and cheeks called a butterfly rash. There are also a host of other symptoms including debilitating fatigue, headaches, fever, pain and swelling on the joints, chest pain, hair loss, and ulcers of the nose and mouth (Diagnosing, 2015).
A new phenomenon is rising in prominence in the public discussion of health. Despite the significant improvement in clinical procedures, a small but important part of the population evades an easy diagnosis. Often referred to as Medically Unexplained Physical Symptoms (MUPS or sometimes MUS), patients who suffer from these clusters of seemingly unrelated complaints stump general practitioners and specialists alike.
On average, U.S. patients with rare undiagnosed or misdiagnosed conditions wait a little over 7 years for a diagnosis. The longer a patient waits for an answer to their medical mystery, the more uncertain they feel about not only their health, but also their future. As time goes on and the uncertainty grows, the chronically undiagnosed start to believe that those around them are skeptical that their illness exists. Eventually even they start to question, “Is it all in my head?”
America is in the midst of an epidemic, and it’s killing the country.
The epidemic is called overspending on healthcare.
Note: this will be the first in a three-part series about addressing the new world of knowledge about genetic disorders. This first post will be about assessing the chances that we may be at risk for a genetic disease. Future posts will address what we can do with this knowledge.
We live in a relatively new era of medicine in which the genome is sequenced, and we are learning more each year about what genes do and how they might be related to disease. As physicians become more aware of the genetic links between patients and their diseases, patients can and should arm themselves with the knowledge they need to manage this new age of information.
I’d like to discuss a few hallmark features that might be present in your family history which could indicate a genetic disorder in your family. As with approaching the rest of your healthcare needs, knowledge is power!
As the measles virus makes its way back from the brink of extinction, the public sphere has been flooded by heated arguments for both sides of the vaccination debate. For what seems to be the majority of Americans, this is a battle between science and irrationality. Yet amid the media hype and angry rhetoric an interesting theme has emerged in the outbreak’s narrative. In defending themselves through interviews, discussion forums, and even the mouthpiece of political candidates, many parents claimed that trust was at the heart of their decision not to vaccinate. How could they trust that the government, the CDC, or even their family doctor know what is best for their child?
What would you do if you begged for help for years, but no one listened? What would you do if you needed emotional support, but you got only judgment and ridicule instead? What would you do if you if the world forgot about you?
This is the structural violence that undiagnosed patients experience every single day.
In this age of the information superhighway, the possibility of empowering patients and healthcare providers through enhanced communication is better than ever before. The use of electronic devices allows both patients and healthcare providers to learn more, organize information and communicate better.