February 2021

COVID-19 has presented unique challenges in health care for the rare community. We have faced a myriad of difficulties over the last year due to this novel and deadly virus.

I spoke with a close friend recently and we discussed the challenges in our own health care over the past year. We commiserated over having had to forgo in person appointments in lieu of virtual appointments with our providers. Not being able to have an office visit means that for some certain medical symptoms and ailments could go undetected. Personally, I have not seen my rheumatologist in over a year and as a result have not had a physical examination. Those exams can tell my doctor things like whether I have inflammation in my joints. and as a result would alter the course of my treatment.

My friend has not seen her cardiologist in over a year. She requires follow up EKGs and other preventative and diagnostic testing. She also has been unable at times to get her B12 shots when doctor’s offices closed.

I have had to put off diagnostic GI imaging as a result of elective procedures being cancelled. Dental care and preventative screening was unavailable for a time and not all procedures are available even today. After putting off a mammogram due to offices being closed, I was told by a technician that women have gotten breast cancer because they were not able to get their yearly screening.

Most of us in the rare community have experienced some or all of these challenges. In my case, and in the case of the friend I spoke with, we have specialists for every system in our body. We and the rest of the rare community has struggled as a result of the closures and limitations in health care. Wearing masks have caused people with asthma, other breathing conditions, and autonomic dysfunction to struggle. I am just now being vaccinated and as a result of my immunosuppressed status I had a reaction to the vaccine that wasn’t predicted. I am now bracing my body for the impact of the second shot.

All of these challenges have been met by the rare community and we have persevered despite them. I am trying to picture a brighter future, one where we return to a more “normal” lifestyle and resume our health care appointments, procedures, and preventive treatments. I know we have a long way to go to resuming normalcy, but I have hope that we will soon reach that point.