Adrenal patients and diabetics do not have equal access to life saving infusion pumps

Type 1 Diabetes is the disease where the pancreas fails to produce the correct amount of insulin, thus rendering someone insulin dependent.

Adrenal insufficiency is a disease where the adrenal glands fail to produce the proper amounts of steroid hormones and requires lifelong steroid medication for cortisol replacement.

Unlike diabetic patients who have glucometers, adrenal disease sufferers have no meter to check their cortisol levels. They must be constantly vigilant of their own low cortisol symptoms. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol. In an adrenal insufficient person, this does not happen. They must artificially manage their cortisol, which can differ from day to day. They require an emergency cortisol injection if their levels drop to a critical point.

Hydrocortisone is the standard cortisol replacement medication, which only has a blood serum half-life of 90 minutes and must be taken multiple times a day. This medication must be processed through the stomach and the liver before reaching the blood stream.  This causes an abnormal rise and fall of cortisol levels, which results in subpar function, increases mortality rate and decreases quality of life.

However, advances in research have found a solution for adrenal patients. The concept of Cortisol Pumping is the use of solu-cortef (inject-able version of cortisol when mixed with saline) used in an insulin pump programmed to disperse cortisol according to the natural circadian rhythm. This method bypasses the gastric passage and delivers cortisol in a more natural way. With this method, an adrenal insufficient patient can receive cortisol constantly. Side effects due to malabsorption are decreased and patients have been reported to have improved sleep, weight management and experience an overall improvement in their quality of life. This method has also been proven to lessen the prevalence of adrenal crises and lessen hospitalizations due to low cortisol.

Despite the vast amount of research showing the efficacy of this treatment, infusion pumps are not offered to adrenal insufficient patients. Unlike diabetics, they do not have easy access to infusion pumps and supplies.

The Right to Try Act which was passed in 2018, mandated that patients now have legal rights to access life-saving treatments which are not yet FDA approved. Adrenal Alternatives Foundation is a 501c3 organization dedicated to providing adrenal insufficient patients with the resources to safely and legally begin the cortisol pumping method. The nonprofit works to educate physicians on how to manage this protocol. They also assist patients in obtaining insurance approval and their “Pumps for Purpose Program” helps provide pumps and supplies to adrenal patients, with or without insurance coverage. They have also created the resources: Cortisol Pump Guide Book and the Cortisol Pumping website to help guide patients in their pumping journey. Their hope is that one day, there will be disease equality and both adrenal patients and diabetics will both have easy access to infusion pumps.

This information was brought to you by the Adrenal Alternatives Foundation for educational use only and is not meant to provide medical care or legal advice.

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We appreciate all contributions which allow us to further our mission, Education, Encouragement and Advocacy.

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Cortisol Injection Instructions QR Code

An adrenal crisis is defined as a life- threatening, medical emergency caused by insufficient levels of the hormone, cortisol. It will lead to death if left untreated and must be quickly addressed with the administration of an emergency cortisol injection. Adrenal patients should always carry an emergency injection and administer it immediately in the event of an adrenal crisis. Patients should also wear an identifying medical alert bracelet that states they are steroid dependent.

Adrenal Alternatives Foundation has created a QR code which can be scanned to instantly access the lifesaving information on how to administer an emergency cortisol injection to treat an adrenal crisis.

How to Scan a QR Code

  1. Open the QR Code reader on your phone.
  2. Hold your device over a QR Code so that it’s clearly visible within your smartphone’s screen. Two things can happen when you correctly hold your smartphone over a QR Code.
    1. The phone automatically scans the code.
    2. On some readers, you have to press a button to snap a picture, not unlike the button on your smartphone camera.
  3. If necessary, press the button. Your smartphone reads the code and navigates to the intended destination, which doesn’t happen instantly. It may take a few seconds on most devices.

Inject Don’t Neglect!

Always administer an emergency cortisol injection in the event of an adrenal crisis.

This information was brought to you by the Adrenal Alternatives Foundation for educational use only and is not meant to provide medical care or legal advice.

More information on managing adrenal disease can be found on in the book A patient’s guide to managing adrenal insufficiency.

We appreciate all contributions which allow us to further our mission, Education, Encouragement and Advocacy for all adrenal disease.

Donate to Adrenal Alternatives Foundation

Rare Disease Day 2021

Help us Raise Adrenal Disease Awareness on Rare Disease Day 2021

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Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

For #RareDiseaseDay we invite you to join us with the
AI Butterfly Challenge, where we are raising our hands for adrenal disease awareness.

Our objective is to flood social media (pinterest, instagram, facebook and twitter) with our butterfly photos to spread awareness on ALL ADRENAL DISEASES!

Rare Disease Day is February 28, 2021

To participate- Take a photo with your hands in the shape of a butterfly and upload to social media using the hashtags #RareDiseaseDay and #AIButterfly!

You can edit your photo with the template download here!!

Or, if you’d like us to edit your awareness photo send your photo to adrenalalternatives@gmail.com

We hope you join us in raising awareness for all adrenal disease!

The Butterfly: Story behind the Symbol for Adrenal Insufficiency

Out of all the possible symbols that could represent adrenal disease, why was the blue butterfly chosen for adrenal insufficiency?

Butterflies have long been a symbol of rebirth, beauty and grace, but more so than these facts, butterflies share many similarities with adrenal insufficiency patients.

The butterfly is a powerful symbol of transformation. Butterflies represent the ability to move from one state, perspective or lifestyle to a new one.

Like most adrenal patients, the butterflies go through a troubling time of transition. To achieve metamorphosis, the caterpillar spins itself into a cocoon. The caterpillar and adrenal patient alike undergo a process that changes their lives permanently, only to emerge to a new normal. The butterflies time in the cocoon can be likened to many adrenal patients experiences before diagnosis: the medical tests, the hospital trips, and the realization that your body was changing right in front of you and it was out of your control.

Interestingly enough, butterflies and adrenal patients both rely on high amounts of sodium for their survival.  Sodium chloride provides essential nutrients and for this reason, a butterflies diet consists of items which naturally contain sodium such as grass, mustard, oak and milkweed. Butterflies have also been known to drink tears of other animals because of the sodium content. Talk about getting strength from your enemies!

In Native American culture, butterflies are said to represent wisdom and intuition, which are valuable assets in the daily management of adrenal disease. Adrenal disease warriors must constantly be aware of their cortisol levels and have the wisdom to know when to updose.  

Butterflies are a powerful symbol of rebirth and the start of a new beginning. A diagnosis of an adrenal disease is the beginning of a new stage in life. Just like the butterfly, adrenal patients must learn how to exist with the new changes.  

Adrenal patients, we are no longer caterpillars, we found our wings and are learning to fly.

The Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization.

EIN: 83-3629121.

Donate to Adrenal Alternatives Foundation

The Cortisol Pump Saved my Life

This is what undiagnosed adrenal insufficiency looks like.

I was 96lbs at 5’4. My hair was falling out. I was fatigued. I struggled to breathe. My anxiety and mental health was slipping. I was 22 years old, dying and I knew it…….but I had no idea why…….

Notice the sea salt in the background?

I was craving it and eating it like candy.

I went to countless doctors, specialists and medical professionals, who never could find any answers.

Then, tragedy struck, I had an adrenal crisis on my 23rd birthday. Below is the lab result from my blood cortisol level test. After this result, I was transferred to Cleveland Clinic Florida, where they administered an ACTH Stim test, which I epically failed. I was then diagnosed with primary Addison’s disease and started on hydrocortisone and fludrocortisone.

After my adrenal crisis, my life was never the same. I struggled to stabilize on the oral steroid tablets due to malabsorption issues stemming from my congenital disorder, Medullary Sponge Kidney. My weight went up and my quality of life went down.

Research shows that adrenal disease patients diagnosed after an adrenal crisis are statistically less stable than those who are diagnosed never having an adrenal crisis.

This was definitely the case for me. I watched my life crumble. After my adrenal crisis, I suffered central nervous system damage and not only was unable to work, but also struggled to put pants on, hold a spoon and ever shower myself.

I was only 23 years old, facing a bedridden reality where I had to face my own mortality. I went to doctor after doctor, just hoping for a miracle, to no avail.

I was determined to get my life back, so I began obsessively searching for ways to improve my health. I was fortunate to come across Professor Hindmarsh’s book, Congenital Adrenal Hyperplasia where he mentioned the cortisol pumping method.

I knew this method was my best chance at stabilizing with my adrenal insufficiency. Over the next two years, I pursued this treatment. I visited countless endocrinologists in hopes that they would write my prescriptions for the pump, the medication (solu-cortef) and the supplies to begin cortisol pumping, again, to no avail. I was met with the answer of NO on every occasion, citing the reason “adrenal disease is just not managed that way” or “It’s not FDA approved.”

After two years, I finally found a local nurse practitioner who was willing to write the necessary prescriptions. Victory, finally….

……..or so I thought.

I quickly discovered how difficult it was to obtain insurance coverage for an infusion pump if you are not diabetic. Even though I had FINALLY found a doctor willing ti write the prescriptions, my insurance not only denied the pump and the supplies, but also denied the solu-cortef medication as well.

I appealed the decision from the insurance company and continued to fight to start the cortisol pumping method. Florida Blue never approved my request.

It amazed me to see how difficult it was to start the cortisol pumping method. There were so many obstacles to overcome. It was then I realized that there was a massive deficit in the world and I was going to do all it took to fill that deficit, not only for myself but for every adrenal disease patient suffering as I was.

That was the day Adrenal Alternatives Foundation was born.

No longer will we have to scope out ebay, craigslist and internet sources for infusion pumps or supplies. No longer can doctors tell us this method isn’t possible. No longer will anyone have to feel insane for attempting a new method to manage their cortisol replacement.

Adrenal Alternatives Foundation is proud to have a clinical team eager to direct adrenal patients, families and physicians to all possible options to manage adrenal insufficiency.

We are also pleased to be aligned with the organization CR3 to provide pumps and supplies to adrenal patients need them; with or without insurance coverage.

The cortisol pumping method saved my life. Though it is not a cure for adrenal insufficiency, it is allowing me to live my life in a way that was not possible on cortisol tablets.

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Click HERE for more information on cortisol pumping.

You can also read more about managing adrenal disease in the book, Adrenal Insufficiency 101, Patient’s Guide to Managing Adrenal Insufficiency.

The Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. We are a patient empowerment organization that encourages, educates and advocates for sufferers of all adrenal diseases and are guiding adrenal disease sufferers to every possible resource to manage their health.
EIN: 83-3629121.

We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease.

Donate to Adrenal Alternatives Foundation

Special thanks to NP Photography for sponsoring our Adrenal Awareness Photography Session.