Adrenal Insufficiency United

Those who are facing a cancer diagnosis, are in the midst of cancer treatments or are in remission - I am seeing a HUGE increase in the amounts of cancer patients suffering from #adrenalinsufficiency from medications that help in survival from cancer. When I ask these new members how they are receiving their diagnosis most often it is #adrenalcrisis in an #emergencyroom. There is no need for ANYONE to die of an adrenal crisis - it is very often avoidable and is treatable with timely diagnosis and treatment!! #cancer in and of itself is scary and takes away too many lives, we need to make sure that we are treating adrenal insufficiency caused by immunotherapies immediately!! #adrenalinsufficiencyunited is a nonprofit dedicated to helping those with adrenal insufficiency of any cause and their caregivers. As director of Adrenal Insufficiency United I will keep talking about this until I know I am heard. Please reach out for more information or to work with us to help in this fight!!

Mark your calendars!!!AIU has set the day for our one day conference in Portland, OR. It will take place on Tuesday March 25th. Our tentative plan is to have a morning session (most likely around 10am), lunch and two afternoon sessions. More details on location and sessions will follow soon. Additionally we have discounted tickets for that evening's Portland Trailblazers game. AIU will also have a booth on the concourse to spread our message as well. #adrenalinsufficiency #raredisease #chronicillness #addisonsdisease #cah #addisons

AIU works together with Danny's Dose ensuring that EMS can administer a patient's self carried medications, like the solu-cortef, needed for adrenal insufficiency patients, in an emergency. Once a week I will start posting about current protocols that we are aware of in specific states to make sure people are aware. ****As always, we encourage everyone to have signed doctor's orders and keep all medication in their prescribed, labeled containers. Then go visit you local EMS and tell them you need to create an emergency treatment plan. Suggested steps from Danny's Dose will be in the comments. ****I am starting with New York because we just got updated guidelines. This will be in comments. ****After you have visited your EMS, please fill out our survey, as the states, AIU and Danny's Dose all want to know what the experience is when people go in to talk to local EMS about protocols. ****If you have any questions, please ask.**** #raredisease #savinglives #changingprotocols #EMSprotocols #EMSguidelines #CAH #AddisonsDisease #adrenalinsufficiency

Adrenal Insufficiency United is excited to share our conference schedule for 2025 and 2026. If your nonprofit is interested in partnering with us for any of these events please contact us!! #raredisease #advoacy #adrenalinsufficiency #addisonsdisease #cah

Very excited on my first day back to work after attending EMS World Las Vegas. I have 8 volunteers in my organization that are ready to help me evaluate where we are and assist me in working with Darlene Shelton at #DannysDose to #makechanges and #savelives While I am Director of #AIU, our outlook is broader, looking for paramedics to have the ability to administer patient carried medications for all who require specialty medication for emergencies!! There are some with adrenal insufficiency who may respond better to one medication or another. And then there are 15 other medical conditions that require specialized medicine. So, let's cut to the case and give patients what their doctor has ordered for them to have! #raredisease #chronicillness #EMSWorld2024

A resource we have not shared in a while is our map of Endocrinologists. On the graphic below I made an important note: AIU does not endorse these doctors, they have been reported to us by our members as doctors they have had a positive experience with in dealing with adrenal insufficiency. https://lnkd.in/e3CuqXn...

On October 1st Adrenal Insufficiency United and The Healthcare Navigation Project will be hosting a 1 hour interactive webinar by Lauren Kopsick on Specialty Healthcare where she will really dig and leave everyone with information they can put to use advocating for their own best health care right away. Tow opportunities at Noon EST and 7pm EST with Q&A time during both. Registration is a $10 donation that is split between these two nonprofits. Please register here - https://lnkd.in/eawWyb36

Next week, as Director of Adrenal Insufficiency United, Kerri Engebrecht will be traveling to Las Vegas for EMS World. I will be there in conjunction with Danny's Dose. On Tuesday we will be finalizing what will be the first emergency treatment guidelines for adrenal insufficiency with EMS professionals, endocrinologists and emergency room physicians. Then on Wednesday we will begin sharing our message with EMS from all over the country. Our message is consistent - allow EMS to administer self-carry medications with signed doctor's orders and save lives. There are 16 conditions identified by Darlene Shelton with #DannysDose that require administration of self-carried medication in an emergency situation. In the case of adrenal insufficiency if the patient does not get their meds onboard within 20-30 minutes they very likely will have brain damage and soon after an #adrenalcrisis can become fatal. #EMSWorldLV #EMSWorld #savinglives #adrenalinsufficiency #addisons #CAH #advocacy #raredisease

AIU is in the process of planning our conference schedule for the next couple of years. In 2025 we will host one day conferences in LA, Portland and Phoenix. In 2026 we will host a three day conference in Minneapolis Mall of America! We are interested in partnering with other rare disease organizations related to adrenal insufficiency. #adrenalinsufficiency #raredisease #advocacy #cah #addisons #panhypopit

As Director of Adrenal Insufficiency United and the work that I do with Darlene Shelton with Danny's Dose I have been reaching out to state EMS Directors recently. I am hoping that I will be able to meet with many in person at EMS World in Las Vegas in 2 weeks. Why am I reaching out? Why is this important? Let me use adrenal insufficiency, my son's Addison's Disease as a specific example. I want to know that when we pack up our car to travel from Tennessee to Wisconsin, that should we get in an accident anywhere along the way paramedics could treat him properly. To some that probably sounds like they should obviously be able to. But I was shocked to find out 9 years ago when he was diagnosed that unless it is specifically included in a paramedic's scope of practice they cannot administer self-carried medication. Now, my son's life-saving medication is 14 steps long to administer and is only given (usually) in an emergency. It is needed with 20-30 minutes to prevent brain injury, and soon after that would be death. Without it being included in a scope of practice, a paramedic could come across us, my son lying there unconscious with his meds in there case labeled and not able to administer. This is why I am reaching out. On behalf of those with adrenal insufficiency and any other condition that requires specialized emergency medication that may not be carried on an ambulance.