The situation in our hospitals is getting more chaotic so managing and advocating for rare disease care is even more challenging. A hospital is a challenging place for a rare disease patient at any time but the 'no visitor' rule has complicated communication and the ability for a loved one to help advocate for your care.
Have you heard about the new anaphylaxis management algorithm?
If you or someone you love has had anaphylaxis that required an epi-pen, it is likely that you were told to call 911 and immediately go to the ER for observation.
Last week, FARE updated their recommendations to include COVID-19 into the risk/benefit balance of monitoring at home vs. an ER visit. This is especially important in areas where ERs are swamped with COVID-19 patients although most ERs have new procedures to screen for COVID-19 when getting checked in along with a focus on minimized time spent with any patient to lessen risk of transmission.
As you can imagine, these new recommendations have caused a bit of controversy and concern in the food allergy and mast cell disease world.
Let’s take a closer look at the new recommendations and why they are being made.
Dr. Thomas B. Casale, the chief medical advisor for operations with FARE (Food Allery Research & Education) and...
Getting rare disease care has never been easy but with the coronavirus outbreak, it has become even harder. Clinics are closing, surgeries are being rescheduled and long-awaited appointments are being postponed.
Many of you may have had things canceled or postponed. As disappointing as this is, it is important to realize that this is being done to help our medical system handle the coronavirus outbreak from a logistic point while also trying to optimize your safety as well.
Your doctor, their clinic and/or hospital will be following recommendations by the CDC (Center for Disease Control) and ACS (American College of Surgeons) along with careful consideration of your specific medical case to decide what can and should be rescheduled.
Our doctors were struggling to survive in a broken medical system before but now they are entering the totally unchartered territory of providing medical care during a pandemic. The medical system...
Depending on where you live, how much you follow the news and your general personality type, you may or may not be concerned about COVID-19. Panicking doesn't help anyone but being prepared may help and certainly won't hurt.
There are a lot of general recommendations out there but here are several specific ways that you can prepare as a rare disease patient.