Why Should We Talk About Death with Adrenal Insufficiency?
I typically avoid the topic of death with adrenal insufficiency. It is scary. We don’t necessarily want to talk about death, and especially death due to our disease. Several of my friends change their social media profile picture for 24 hours after someone passes due to an adrenal disease. Whenever I see it, it causes me to immediately pause whatever I am doing. It is a sobering reality check.
But this topic should not be ignored. It should be handled delicately, as there is an importance of perception with how you approach your life. This information needs to be collected, but not from the standpoint of “Doom and Gloom!”
We want to talk about death with adrenal insufficiency in order to raise awareness and hopefully reduce the number.
Tips on Remaining Clearly Alive
Our medication is not optional. Without it, we die. It really is that black and white. This is not an “oops I forgot to take it” type of medicine. As such, we should always have a lot more of our medicine on hand than we think we need. Stock up. Refill your prescription as soon as insurance allows. Try to never be in a position where you could run out. If you are running low, immediately talk to your medical provider in order to increase the amount prescribed each month. You should have enough for your daily maintenance and stress dosing.
You should also have an emergency injection kit. Preferably, you should have several emergency kits stashed in multiple convenient places. Think of them like fire extinguishers. In case of a fire, you do not want to have to locate the lone fire extinguisher locked away somewhere. Your emergency injection kits should be easily accessible.
Below are six other tips that I want you to commit to memory and put into practice.
- If you are feeling unwell, immediately increase your cortisol replacement dose.
- Have an emergency injection and KNOW HOW TO USE IT.
- Do not trust that medical professionals will know what to do.
- Take vomiting and / or diarrhea very seriously.
- It’s never “just a cold.”
- If you are on the cortisol pump remember “When in doubt, change it out.”
Trigger Warning: Death with Adrenal Insufficiency
Although my blog centers around LIVING with Adrenal Insufficiency and remaining Clearly Alive, this disease does kill. This post is going to make reference of every single death due to Adrenal Insufficiency that we have on record for 2019. Painstaking effort has been taken to ensure that this list is accurate.
Also, some of these deaths were preventable.
Please prioritize your own health, both mentally and physically. If you do not want to read on, that is ok. May you remain Clearly Alive.
We understand that death is a natural chapter in this adventure called life. We are also told that those of us with adrenal insufficiency have an average life expectancy. And yet the average age of those that passed away in 2019 was 41.3. That is almost half of what the average life expectancy of someone in the US. Ellie Rae was only 6 months old.
Of the forty three deaths this year that we have become aware of, it is our opinion that eighteen of them were preventable. Stated differently, 42% of the deaths due to adrenal insufficiency in 2019 could have been avoided. I also want to reiterate that these are just the deaths we have been made aware of. There could be more.
What do we call preventable?
Joyce had her steroids withheld from her for over three days while in a hospital. Individuals with adrenal insufficiency die without their steroids.
Greg was sent home from the hospital after being told he wasn’t in true adrenal crisis. But he was. He later went to sleep and never woke up.
Callum was only eight when he was sent home from the hospital in October with low blood sugar and tonsillitis. He died in the ambulance on his way back.
Often, these preventable deaths are due to lack of access to medicine. A family member did not believe the individual required their emergency injection. A doctor did not believe that their patient was in true adrenal crisis. The individual thought they were “just tired” and could “sleep it off.” They never woke up.
The fear of over-supplementation and weight gain has been emphasized so much that we will put ourselves in extremely dangerous situations of remaining severely under-dosed in times of critical need.
Please rid yourself of steroid guilt. Do not prioritize your weight over your life. But please do prioritize your own mental health and emotional well-being. You are not done yet and you are well loved in this community.
I want you to remain Clearly Alive.
2019: In Memoriam
Below is a list of those that we know of who passed away with some form of adrenal insufficiency. The list was created with a combination of information from NADF and various Facebook groups. They have all been verified by multiple sources often including actual obituaries or death notices. It is compiled mostly with information from the USA, as that is where we are located. This means that the death count is probably higher than what we are reporting.
If you notice someone missing, please let me know.
- Marsha Atwood
- Jennifer Adams (37)
- Cynthia Michael (52)
- Stephanie Frisby (60)
- Sarah Lazerson (24)
- Kevin Kersting (26)
- Jake Black (59)
- Stephanie Brier (46)
- Donna Huck-Block (76)
- James Aikenhead (37)
- Alex Leonard (32)
- Ellie Rae Tate (6 months)
- Lynn Ann Wrobleski (70)
- Ronda Allen (42)
- Natalie Preston (26)
- Ryan Kennedy (24)
- Konnor Swarts (8)
- Patti Phears
- Christopher Casstetter (29)
- Brian High (42)
- Joshua Steiner (41)
- Scott Stickland (58)
- Rebecca Castle (52)
- Joyce Hayes (68)
- Bonnie Wolff (74)
- Julie Savard (36)
- Evan Strom (29)
- Charles ‘Chuck’ Glandon (47)
- Greg Morgan
- Luke Wright (28)
- Jill Smith (58)
- Cody Lohman (22)
- Steven Wessell (27)
- Callum Cartlidge (8)
- Tyler Morgan (24)
- Joyce Bergma (67)
- Heather Wagner (37)
- Megan O’Shea Lillich (43)
- June Buchan (42)
- Kat Pelletier
- Tracie Alam (37)
- Grace Cole (90)
- Christy Hadgisava (43)
May you remain Clearly Alive, dear family.