Preparing for the Worst in the Best Way

I have been MIA for a couple of months, but I am back! I had a planned vacation and then rare disease life took over and when that happens this mom puts all her energy in that direction. But last week was the EMS World conference in New Orleans - it was a conference that I had signed up to do as an exhibitor with Danny's Dose on behalf of Adrenal Insufficiency United. EMS World brings together leaders from all over the country and even outside borders our to share ideas, protocols, and innovations with others. The level of collaboration at this event is unlike any other, EMS conference and I was excited to have a chance to share our message with so many....

I have mentioned Danny's Dose here every now and then and had been familiar with them and their founder Darlene Shelton has become a friend in the rare disease world. Every other time I have been at a conference with Danny's Dose I have been wearing the hat of another organization I volunteer with - either AIU (Adrenal Insufficiency United) or NORD (National Organization for Rare Disorders. This time I was with Danny's Dose representing Adrenal Insufficiency United - I was sharing AIU's message with Danny's Dose and sharing Danny's Dose's message with every person who stopped at our table - be they fire chief, paramedic, EMS Director, nurse, educator. It was my first time soaking up the entire message of Danny's Dose and sharing their entire message and seeing the impact that they have and could have on so many!!

Here is the elevator speech that I gave countless times in two plus days of the conference.... "Danny's Dose is a non-profit organization started by a hemophilia family and working to establish guidelines for 40 illnesses that require "specialized emergency treatment". Of these 40, 16 also require specialized medication that patients carry with them. While many of these conditions are rare, when you add up the total number of people effected by them we are talking about over 28 million Americans! On Tuesday we brought together the first three medical conditions to establish what we are hoping will be the rough draft for national guidelines. These guidelines help to protect paramedics in the field from liability issues. The other thing that Danny's Dose does is provide education for patients and families on how to prepare for these emergencies including written emergency plan, headrest covers with pockets for signed doctors orders, etc...."

Then I would later explain my person connection - that if I leave in the car with my son with Addison's Disease and am traveling five states away to visit family, I want to know that each city, county and state has similar guidelines as to how to treat him should we get in an accident. We always travel with his emergency injection, but I found out soon after his diagnosis that not all paramedics were allowed to inject self-carry medications - actually very few are. This mom has practiced twice on an orange, but the idea of being in an accident, possibly also being injured, for sure being shaken and having to administer a life-saving 14-step injection to him terrifies me! I want to know that a well trained medical profession is able to without fear on their end of liability issues.

While the only illness I can personally speak to on specifics is adrenal insufficiency, all 40 conditions that Danny's Dose have identified have specific instructions as to what should or should not be done in an emergency situation. The guidelines that are being created are not by advocates like me, they are from the top specialists (endocrinologists for adrenal insufficiency) and paramedics in the country. A few advocates were included in the discussion to explain what happens in the real world now, but mostly we were there to listen and because we would be talking about this the next few days at the conference.

Of course, there are still many steps before these guidelines are active. We will go through and edit them, they will be vetted by more experts. Then as they are slowly rolled out data will be collected. The plan is that each year at EMS World a team will come together and review any guidelines that are in place because we know (and always hope) that treatments change. And each year more medical condition will be added in until all of those 28 million effected people know that there are guidelines protecting them in emergencies and protecting the people who protect them.

For more information on Danny's Dose - https://dannysdose.com/?page_id=57