Adrenal Insufficiency United

08/27/2025

🌟 Understanding Adrenal Insufficiency 🌟

Did you know there are actually three types of adrenal insufficiency? Knowing the difference helps patients, families, and even doctors provide the best care. Here’s a quick breakdown:

🔹 Primary AI (Addison’s Disease):
The adrenal glands themselves are damaged and can’t make enough cortisol (and often aldosterone). This is the most well-known form though not the most common.

🔹 Secondary AI:
The adrenal glands are healthy, but the pituitary gland (in the brain) doesn’t send enough ACTH — the signal that tells the adrenals to release cortisol.
🔹 Tertiary AI:
This happens when the hypothalamus (another part of the brain) doesn’t make enough CRH to signal the pituitary. It often develops after long-term steroid use that suppresses the brain–adrenal communication.

👉 While the cause is different, all types mean the body can’t make enough cortisol — a hormone that’s essential for life.

💙 No matter the type, people living with adrenal insufficiency need awareness, support, and emergency planning. That’s why AIU is here.

Information in this graphic compiled by AIU using sources from the Lancet 2014 “Adrenal Insufficiency”: Evangelia Charmandari, Nicolas C Nicolaides, George P Chrousos. Additional resources from NIH and Mayo Clinic were also used. Reviewed and edited by Dr. Mitchell Geffner.

https://aiunited.org/information-adrenal-insufficiency/

08/27/2025

Exciting news from our friends at CortiCheck!!

🚨 CortiCheck is Heading to Harvard! 🚨

Next week we will be in Cambridge MA for the Global Genes Rare Disease Drug Development Symposium which brings together the brightest minds innovators and advocates in rare disease.

For CortiCheck this moment is huge. It is our chance to
✨ Share why real time cortisol testing is lifesaving
✨ Connect with leaders who can move this project forward
✨ Build the partnerships that will shape CortiCheck’s future

We are grassroots. We are bootstraps. We are pushing every ounce of momentum we have to make CortiCheck a reality. But we cannot do it alone 💪

👉 If you believe in this mission please consider supporting us. Every contribution fuels the work that could bring real time cortisol monitoring into the hands of patients and families who need it most.

❤️ https://gofund.me/40702998

🌐 Join us virtually! If you cannot make it to Cambridge you can still register for the 2025 RARE Drug Development Symposium livestream and be part of the movement wherever you are.

🔗 RARE Drug Development Symposium Live Stream - Global Genes

Together we can make lifesaving change. Thank you for standing with us.
Kirsten Norgaard, Founder of CortiCheck™

08/26/2025

🌟 AIU Update! 🌟

I know we have been quiet here, but a lot is happening behind the scenes...

Our Board of Directors meets tomorrow, and we can’t wait to share what’s ahead for our community. Exciting things are happening — from opportunities for one-on-one consultations to more details on the 2026 AIU Summit speakers in Minneapolis!

Stay tuned — we’ll be posting updates soon. Thank you for being part of this amazing community. 💙💛 Together, we’re making a difference for everyone affected by adrenal insufficiency.

08/16/2025

I think many of our members will find this interesting...an interview from a recent endocrinology conference on pump use for adrenal insufficiency. https://pituitaryworldnews.org/dr-naila-goldenberg-speaks-about-adrenal-insufficiency-and-her-experiences-with-cortisol-pumps/?fbclid=IwY2xjawMNmaNleHRuA2FlbQIxMQABHuY3aHKQ-2qB73xEljvy9Pho1ArGVXjPoLD-VUYzB4OFPLGskXQCl5aeSKDB_aem_r62vDXYjzSQx0UpKVXBTrg

08/15/2025

I usually do this in our groups, but want to do it to a bigger audience today. As we end the week what are your wins?? We know that living with or caring for someone with a chronic illness comes with many challenges, but we also know how important it is to look on the brighter side of things now and then. I like to take time on Fridays to celebrate our weekly wins with each other and support each other in this way!!

For more about Adrenal Insufficiency United or adrenal insufficiency in general please visit https://aiunited.org

Looking for . We're here for you! Adrenal Insufficiency United (AIU) dedicated to supporting individuals and caregivers affected by adrenal insufficiency; empowering them with education, resources, community building, and legislative advocacy. Looking for . We're here for you! Looking for Resources,...

08/12/2025

🧬 Immunotherapy-Induced Adrenal Insufficiency: We Need Your Help! 💉

We’re working on an important project to support those who developed adrenal insufficiency (AI) as a result of cancer immunotherapy treatments. Our goal is to better understand the needs of this growing population and build targeted education and support programs.

✅ We have volunteers reaching out to oncology centers across the U.S.
🗣️ Next, we’ll be connecting with cancer support groups.
📋 And most importantly—we’ve launched a needs assessment survey to guide our next steps.

🔗 Please help us by sharing this project and getting the survey into the hands of anyone affected. Whether you're a patient, caregiver, or healthcare provider, your voice matters. Click here for our 12 question needs assessment and please share - http://bit.ly/3J36ptz

Together, we can make sure no one navigating adrenal insufficiency after immunotherapy does it alone.

08/11/2025

🆘 Medical IDs Save Lives – Especially with adrenal insufficiency! 🩺

Whether it’s for you or your child, a medical ID is one of the most important tools to help emergency responders know what to do in a crisis. Here are some quick tips to get the most out of yours:

✅ Choose a style you’ll actually wear - remember to make it clear, simple and obvious it is for medical!!
✅ Include only life-saving info (like “Adrenal Insufficiency – Needs Cortisol”) - work with your doctor!!
✅ Make sure it’s easy to spot
✅ Add emergency contact info if space allows
✅ Update it if anything changes
✅ Consider allergies or other critical conditions

💡 For kids, durability matters! Some parents keep extras in backpacks or emergency kits.

👉 We’ve partnered with Lauren’s Hope to make it easy to find stylish, durable options—and support AIU at the same time (8% of each purchase comes back to AIU to use for education, support and advocacy).
🛒 Shop through our link: https://tidd.ly/3UO2MKt

Stay safe and prepared. 💛

08/09/2025

👀 Check this out!!

🙌As part of their 10 year anniversary our friends at Danny's Dose have announced their Hero Awards!!

🏆 Please note that two members of Adrenal Insufficiency United's Medical Advisory Board were selected - Dr. Craig Cooley, MD, MPH, EMT-P, FACEP, FAEMS and Christine Yedinak, DNP, FP, MSN! When I tell you that we have the best on our board, I mean it - they are working hard to make change for every one of our. members, and beyond.

And thank you to Darlene Shelton and Danny's Dose for all the work you do and for recognizing the efforts of those who assist along the way!!

https://www.facebook.com/dannysdose.campaign/videos/1263199165209741

08/08/2025

🚌📚 Back-to-School Season as a Parent with Adrenal Insufficiency

Back-to-school time can be exciting — and exhausting. If you’re the one living with adrenal insufficiency, this season can bring added stress, disrupted routines, and more demands on your body.

✨ Here are a few tips to help you prepare:

🌞Plan your mornings: Set out clothes, lunches, and backpacks the night before to reduce early-morning stress.
😴Protect your sleep: Consistent rest is crucial for hormone balance — don’t let late-night school prep steal your recovery time.
💊Prep your meds: Make sure you have a full supply, extras for your bag/car, and a current emergency injection on hand.
📆Have a plan for flares: Talk to your partner, friend, or another trusted adult about what to do if you hit a low cortisol day or face a potential crisis.
💟Give yourself grace: You may not be able to do everything. That’s okay. Your health is a priority.

You’re doing so much to support your child — remember to support yourself too. 💛 You've got this.

08/06/2025

💊 Solu-Cortef Shortage? Tips for Working with Your Pharmacist

Navigating the Solu-Cortef shortage can be stressful — but building a strong relationship with your pharmacist can make a big difference. Here’s how to improve your chances of getting it:

✅ Stick with one pharmacy – Consistency helps them track your needs and advocate for you.
✅ Build a relationship – Ask to speak with a full-time pharmacist, and get to know them by name.
✅ If they won’t fill out supply request forms, ask if it's due to time constraints — and offer to come back at a better time.
✅ Still stuck? Ask for the head pharmacist or pharmacy manager.
✅ Bring your prescription early – Don’t wait until you’re almost out. Give them time to order it.
✅ Request partial fills – If a full dose isn’t available, ask for what they can give.
✅ Keep a copy of your prescription on hand – You may need to call around or switch pharmacies temporarily.
✅ Call ahead – Before showing up, call to see if it’s in stock.
✅ Consider local independent pharmacies – Sometimes they have different suppliers and more flexibility.

✨ Remember: You’re not just asking for medicine—you’re advocating for your life. Stay calm, be kind, and keep pushing forward.

08/04/2025

📚✏️ Back to School with Adrenal Insufficiency? Here’s What Parents Need to Know!

As school begins, it’s important to make sure your child with adrenal insufficiency is safe, understood, and supported throughout the day. Here are a few must-do steps:

✅ Meet with school staff — Teachers, nurses, and administrators should know your child’s diagnosis, symptoms of adrenal crisis, and what to do in an emergency.
✅ Provide an Emergency Action Plan — Include symptoms to watch for, when to give a stress dose, and when to use emergency injection.
✅ Supply necessary meds — Make sure the school has access to oral steroids and injectable hydrocortisone, with instructions.
✅ Make a 504 plan (if needed) — Protects your child’s right to medication access, hydration, rest, and absence flexibility.
✅ Educate gently — Offer materials about adrenal insufficiency so the school community understands this hidden but serious condition.

You child's illness may be rare, adrenal insufficiency is widely misunderstood, but with preparation, your child can safely thrive this school year 💛💙