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Jun - Jul 2021

How to Be Your Own Best Advocate

Living with chronic illness is tough on many levels, from struggling to find the energy to get dressed, let alone meet the day's demands, to trying to understand a cryptic explanation of benefits from the insurance company. Factor in the number of care providers who could be involved in your treatment, and the sense of emotional inundation can feel crippling at times. Chronic illness might sometimes seem as if you've lost control over your life — especially as you navigate the labyrinth the healthcare system has become, fighting for your rights and your ability to find treatment on your terms.… full article (pdf)

Is It Time for a Second Opinion?

Those who have undergone surgery have probably heard this rule of thumb: Never go under the knife without getting a second opinion. In fact, many insurers won't authorize surgical procedures without a second specialist reviewing test results or images (X-rays, CT scans, MRIs, etc.), and possibly conducting a separate exam that supports the same conclusion about the proper course of action.…  full article (pdf)

Balancing Government Assistance and Career Goals

Embarrassment and shame. That's what I felt when someone asked what I did for a living. I rambled on about focusing on my writing career or taking time to volunteer, hoping it would appease curiosity. It was a somewhat truthful answer, but it didn't tell the whole story — a story I tried to hide. I couldn't work because I receive government assistance to get my treatments and medication to live, function and experience a good quality of life. And this assistance dictates the amount of income I can receive, which is very little.…  full article (pdf)

Genetic Testing Optimizes Medication Match for Patients

Managing a chronic condition can be frustrating when trialing medications. Sometimes, it can take months or years to find a medication that effectively treats a condition, especially without unwanted side effects. Therefore, streamlining the process with genetic testing can help to avoid stress, while also saving money, time and energy.… full article (pdf)

Understanding the Porphyrias

Many patients with a primary immunodeficiency (PI) and other diseases treated with immune globulin have comorbidities. These diseases may be caused by the PI, or it may cause the PI or be entirely unrelated. In addition, many of these diseases are accompanied by nonspecific and overlapping symptoms. One of the most unusual of these diseases is porphyria, which unlike many other diseases, can often be confirmed by a genetic diagnosis.… full article (pdf)