Unfortunately, when patients and doctors don’t speak the same language, patients face incredible difficulty understanding treatments. This results in more healthcare resources being used than required due to more readmissions, more testing, and more extended periods of hospital stays.
Despite advancements in science and medicine, under 5% of known rare diseases have FDA-approved treatments. For the rest, the reality is that some will have to get palliative care while others will just treat the symptoms to get the disease to remission.
My doctors and I talk a lot when I see them, we have a conversation and, I’m grateful for this. Because, before I went into kidney failure I didn’t have great doctors, they were horrible doctors.
When there are any power dynamics or things that feel uncomfortable, it creates a unhealthy situation and a scary one that doesn’t feel good. I have had a lot of experiences with doctors who were white and who were dismissive of what I was saying.
There are roughly 30,000 people living in the United States with Cystic Fibrosis. A Chronic disease caused by CFTR gene mutation. This mutation impacts the way protein is made in the body leading to inefficient salt transport over the cell membrane resulting in the buildup of sticky, thick mucus in different tissues and organs.
25 – 30 million people in the United States, 30 million people in the European Union, have been diagnosed with a Rare Disease. During this time we ask that you help patients living with chronic illnesses by adhering to public health officials recommendations.