Announcement! The Future of Cortisol Replacement is here.

Despite its revolutionary success rate, treating cortisol deficiency with the cortisol pumping method has long been a difficult process to obtain. Access to infusion pumps and supplies for non-diabetics and also finding healthcare providers willing to manage adrenal patients on this method are just a few issues that have caused massive barriers to achieve this treatment.

Adrenal Alternatives Foundation is changing that. We are proud to announce our latest resources to help patients safely and successfully start the cortisol pumping method. The following resources were established to aid adrenal patients in their journey to cortisol pumping.

As a collaborative publication containing medical studies, clinical research and documented patient empirical evidence, this book includes everything you need to know about the cortisol pumping method.

Cortisol 101 contains the following information:

Chapter 1: Introduction

What is Adrenal Insufficiency?

Important Terms

What is Cortisol Pumping?

Common Myths

Frequently Asked Questions

Chapter 2: Assessments

Testing

Pre-Pump Planning

Steroid Options

Hydrocortisone Injections

Post Pump Testing

Chapter 3: Starting the Cortisol Pumping Process

Finding a Pump Friendly Physician

Choosing a Pump System

Obtaining Insurance Approval

Chapter 4: Creating a Care Plan

Prescriptions & Items Needed

Choosing a Solu-Cortef Ratio

Setting Basal Rates

Updosing and Sick Rates

Sites and Absorption Factors

Chapter 5: Life with the Pump

Exercise

Showering

Traveling

Intimacy

Surgery Protocols

Chapter 6: Resources

Appeal Letter

Adrenal Alternatives Foundation

Sources

  • Cortisol Pumping Interactive Website. Adrenal Alternatives Foundation is proud to release the website, cortisolpump.org to provide an easily accessible, free resource on cortisol pumping available internationally. Click the link below to access the website.
  • Pumps for Purpose Program.   Adrenal Alternatives Foundation is proud to have partnered with the non profit, CR3 to create a program specific to adrenal disease patients to provide them with affordable pumps and supplies, with or without insurance coverage.
  • Physician Guidance. Our clinical team is proud to guide physicians on the necessary protocols that must be taken to safely and effectively create a care plan for adrenal patients seeking to manage their cortisol deficiency via the cortisol pumping method. Though we are not a replacement for medical care or advice, we are proud to help guide physicians on the proper lab testing and prescriptions needed to begin the cortisol pumping method.

If you need assistance on the cortisol pumping method, please fill out the contact form and we will have a team member contact you to schedule a free consult.

You can also download a One pager on the cortisol pump here.

This content has been brought to you by Adrenal Alternatives Foundation, a 5o1c3 non profit organization. We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease. EIN: 83-3629121.

Donate to Adrenal Alternatives Foundation

Adrenal Achievements Series- Voice of Silence Musician, Vinoj

Adrenal Achievements Series- Voice of Silence Musician, Vinoj

Adrenal Alternatives Foundation is proud to feature this month’s adrenal achievement article with musician, Vinoj of Voice of Silence music.

Vinoj was diagnosed with Addison’s disease and has recorded a song about his battle with adrenal insufficiency called “Temple to Castle.” We were proud to interview Vinoj about his journey managing adrenal disease and how it has inspired his music.

We are also proud to announce that Vinoj will be headlining our benefit concert hosted at the Alliance for the Arts in Fort Myers, Florida in December of 2021. (Details TBA)

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Vinoj of Voice of Silence – Artist Biography 

Scarborough-based spoken word and hip-hop artist Voice of Silence is well-known for twisting the way  everyday life is perceived with simple yet profound imagery. His style is constantly evolving, just like  himself, and his newfound approach to fuse musical elements from hip-hop and his South Asian  background with his poetic raps creates an experience that cannot be found elsewhere. 

While also working as an artist educator in schools and community programs, Voice of Silence has  performed at countless events, including opening for ¡MAYDAY!’s ‘Fire in the Sky’ tour, UNITY Charity’s  yearly showcases, and the third annual R.I.S.E. Edutainment ‘416RISE’ showcase. He is seven-times  published in various Canadian poetry collections, including Island Magic and The Tracery of Trees, and he  has released his debut poetry/hip-hop album, Befriending Silence, in April 2017. For his integration and  support of the Toronto arts community through his first album, Voice of Silence received the first ever R.I.S.E. Edutainment Community Development Award in 2016. He was also part of the Scarborough Arts  EAST Mixtape Challenge program in 2018, which allowed him to further develop his hip-hop craft through  a collaborative mixtape titled Time Waits for No One. His passion to tap into his full potential and to connect souls one song at a time keeps the ink flowing and  his pen moving. With his new album coming soon, he released a new EP, Roots, which is a three-song  journey of rekindling and redefining his relationship with his creativity. Roots is available now on all music  platforms!

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Q- Please introduce yourself?
My name is Vinoj, and I was born and raised in Toronto, Canada. By day, I am an engineer, working in rail and transit, and by night, I am an artist educator, a spoken word poet, and a hip-hop recording artist and performer.


Q- What form of adrenal disease were you diagnosed with?
I was diagnosed with primary adrenal insufficiency, more commonly known as Addison’s Disease, in September 2019.


Q- Can you tell us about your song you wrote about your Addison’s diagnosis?
The song “Temple to Castle” was born in the midst of the COVID-19 pandemic, about a year after I started to experience the more severe symptoms of Addison’s pre-diagnosis. I was in a very self-reflective space and was looking back on my journey with Addison’s and how it has impacted my life and shaped me over the past year. As most can relate, I was feeling more alone than before having to be cooped up inside during the lockdown. Poetry and music is my way of expression through which I’m able to connect with others, so I channeled the frustration I felt having these extra obstacles, having to rely on daily medication, and having to work harder to rebuild my physical health into writing this song.

Inspired by Pharoahe Monch’s verse on “The Fight Song”, I wanted to write the intro from the perspective of Addison’s, as if it was a living entity haunting me and wanting to be recognized just like other more common diseases. The following verses were inspired by “TFB” by King Iso, where he treated going to the gym as “training for battle”, and I wrote my verses as building my physical health and motivating myself to continue to fight the symptoms of Addison’s and continue pushing forward. The chorus became an anthem-style battle cry, where I “declare war” on Addison’s and flip the meaning of the phrase “your body is a temple”. I had to make my body a “castle” instead so I can have the physical and mental strength to accept and live with this disease.

I created this song in hopes of connecting with others with similar diagnoses, to show that we are not as alone and rare as health professionals say we are, and to inspire others to not let adrenal diseases hold them back from living their life to the fullest.


Q- Did you struggle to accept your diagnosis of adrenal disease?
Very much indeed. Being 25 at the time, I felt “invincible” and that I will never have to rely on any medications or have any health complications (at least not for a long time), so when I heard about my diagnosis, I wasn’t able to fully take in the gravity of it. It wasn’t until 2 months later, when I had to go back to the hospital because a fever left me completely weak and unable to function that I realized how serious of a condition I have. It probably took me a whole year to finally feel comfortable and accept that I need to live with Addison’s and not against it.


Q- How has adrenal disease changed your life?
Having an adrenal disease has forced me to slow down and listen to my body more. Before all the symptoms and diagnosis, I was always “on the go” and filled up my days from morning until night with things to do. Looking back on this though, I felt that I had spread myself too thin and did not take the time to appreciate the simpler aspects of life. I’m now practicing a lot more self-care through meditation and yoga and learning what my body needs and how the medications affect it as well. Instead of trying to do as much as I can, I am focusing on what matters to me most and what my passions are. Although all of this seemed like a downfall at first and I did feel that I was not being as “productive” as I used to be, I am beginning to appreciate the slower pace and having a more grateful outlook on life.


Q- What goals do you hope to accomplish with your music?
My goal is to connect with others through relatable stories and themes that are captured through my music. I want to capture everyday life in poetic and refreshing ways that allow people to be more aware of themselves and appreciate the immediate world around them.


Q- What is something you wish the world understood about life with adrenal disease?
I wish the world understood that having adrenal disease does not mean we cannot live life to the fullest. I was often told through health professionals and online articles that Addison’s is rare and that it’s even more rare to meet others with it as well, and it’s not easy to regain your physical health, but through the release of “Temple to Castle”, I quickly learned there is a vast international community out there ready to support and inspire each other with their own life stories.


Q- How do you use your music to help you cope with adrenal disease?
Music is very therapeutic to me, as I can spend a whole day just listening to music and being carried away into the world the artists create through their lyrics and instrumentals. It inspires me to tell my own stories in creative ways through music so that I can get lost within the worlds that I create. It is both an outlet that allows me to escape the reality of having Addison’s and at the same time, a tool to allow me to express my journey with it as well. I consider my poems and music to be time capsules that capture what I’m feeling and experiencing in that specific moment, and when I look back at them in the future, it allows me to appreciate how far I’ve come and be inspired by my own experiences.


Q- What is something you wish you could tell all adrenal disease patients?
This disease is not a wall. Although there are some rough days and it feels like a burden, it is just another weight you carry with you on  your shoulder throughout life. It is most definitely possible to live the life you want to while adapting to the routines you now have, so keep pushing onward!


Q- What quote best motivates you?
This quote by Randell Adjei never fails to motivate me: “I am not my struggles, I am not my pain. They are just roadblocks that prove how far I came”

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Vinoj is an example of how you can still accomplish your dreams despite your disease! For more information, you can follow Vinoj at his social media links below-

Website: https://www.voiceofsilencemusic.com/ 

Instagram: http://instagram.com/voiceofsilencemusic

Facebook: https://www.facebook.com/voiceofsilencemusic 

Twitter: https://twitter.com/voiceofsilence_

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This content has been brought to you by Adrenal Alternatives Foundation, a 5o1c3 non profit organization. We appreciate all contributions which allow us to further our mission, Education, Advocacy and Awareness for all adrenal disease. EIN: 83-3629121.

Donate to Adrenal Alternatives Foundation

COVID has taken the Humanity out of Healthcare! Expand the SB 730- No Patient Left Alone Act

Adrenal Alternatives Foundation is an active representative in the Rare Disease Legislative Caucus, where we are a voice for all adrenal disease patients. We are currently proposing the expansion of the No Patient Left Alone Act, originally passed in North Carolina.

Legislative Proposal: Expanding the SB 730 – No Patient Left Alone Act

BILL ANALYSIS: S730 contains the “No Patient Left Alone Act” which ensures the visitation rights of hospital patients during a period in which a disaster, emergency, or public health emergency has been declared.

GOAL: Proposing expansion on the No Patient Left Alone Act, originally passed in North Carolina. We are proposing a standard protocol outlined in a legislative bill that will mandate nationwide protocols that allow chronically ill patients to have a caregiver with them during medical procedures/treatments.

SOLUTION: Standard legislation that mandates medical centers must follow existing guidelines in Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section1557 of the Patient Protection and Affordable Care Act (ACA). There needs to be legislation that allows chronically ill patients to have a caregiver with them during medical procedures, treatments and surgeries even during a pandemic.

Many current COVID restrictions are crossing moral grounds in many cases, which there are thousands of patient testimonials to support. In patients with continuous ongoing treatments such as dialysis, chemotherapy and IV infusion medications, they are now forced to be alone during these already difficult treatment sessions, therefore increasing the suffering and adding potential mental health implications, which then can adversely impact their overall health and wellbeing. The increased potential for patient endangerment and medical errors in patients with rare disease protocols without caregivers and advocates present, should be of great concern not only to patients and caregivers, but to medical professionals as well. Facilities, hospitals and treatment centers are citing covid as the rationalization behind restricting visitor access and not complying with the requirements of the Americans with Disabilities Act (ADA) which clearly states in Titles II and III that health care facilities are mandated to provide reasonable accommodations for persons with disabilities. These accommodations can include visitors who provide the patient with necessary support services, including communication support, behavior support, and support managing anxiety and other unique needs. There are several federal disability civil rights laws that can apply to hospitals – Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section 1557 of the Patient Protection and Affordable Care Act (ACA). All of these statutes protect people with disabilities, and yet facilities, medical centers and hospitals across the nation are denying chronically ill patients a basic human rights of support and comfort of a loved one during medical experiences, citing Covid19 restrictions as the reasoning. The ADA, RA, and ACA are not suspended during the COVID-19 pandemic. The United States Department of Health and Human Services’ Office for Civil Rights issued a statement specifically reminding hospitals that they must “keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of disability” and that the federal disability rights laws “remain in effect” even during the COVID-19 pandemic.

PLEASE SIGN THE PETITION TO SUPPORT THE EXPANSION OF SB730
sponsored by the Adrenal Alternatives Foundation a 501(c)3 nonprofit patient advocacy organization.

https://forms.gle/NqXGrctVqun3tf1T8

RESEARCH & SUPPORTING ARTICLES

Supporting Family Caregivers in Providing Care

Supporting Family Caregivers in the Time of COVID-19 – State Strategies 

Hospitalized Adults need their caregivers – they aren’t visitors 

Caregivers are missing from the Conversation

https://www.jdsupra.com/legalnews/hospital-covid-19-visitor-restrictions-34397/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852166/

https://clinicaltrials.gov/ct2/show/NCT04341519

https://www.adacovid19.org/index

https://www.journalofhospitalmedicine.com/jhospmed/article/226748/hospital-medicine/suffer-alone-hospital-visitation-policies-during-covid-19

https://www.npr.org/2020/05/17/857531789/federal-government-asked-to-tell-hospitals-modify-visit-bans

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.

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

Donate to Adrenal Alternatives Foundation

The Cortisol Pump Saved my Life- Lauren’s Story

Adrenal Alternatives Foundation’s main mission is to provide access and education to “adrenal alternatives” for those who suffer from cortisol deficiency.

For some patients, oral steroid medications are not adequate enough to maintain quality of life, therefore, alternative cortisol replacement methods are a life saving intervention.

Below is an interview with Lauren, a cortisol pumper whose life was saved because of the cortisol pumping method!

Q-Please introduce yourself?

A- Hi, my name is Lauren Michelle and I am 23 years old. I’m a former ballerina turned chemist turned full time chronically ill patient. I am nearly done with my Bachelors of Science in Chemistry, started up at Northern Arizona University, but because of illness I have had to move back home and am finishing the degree at Arizona State University. Currently though I am on medical leave and training my German Shepherd puppy Nova to be my service dog.

Q-What country do you live in?

A- The United States of America. Specifically  the state of Arizona.

Q-What form of adrenal disease were you diagnosed with?

A- At the beginning of 2020 I was diagnosed with Adrenal Insufficiency at the hospital after an acute adrenal crisis. I had zero basal cortisol that they could detect, and then the stim test came back as 0.55 cortisol. Later in the year I was diagnosed as Addisons with further testing and more symptoms showing up.   

Q-Can you tell us about your pump that helps you manage your adrenal disease?

A- Before getting on the pump, we tried EVERYTHING to manage my Addisons. The hydrocortisone oral tablets, a liquid formulation specifically compounded for me, and even IV solu cortef. I have malabsorption of my small intestine, and also suffer from MCAS including a lot of idiopathic anaphylaxis. For about 6 months I was in a cycle of anaphylaxis and adrenal crisis due to flare ups because of inconsistent cortisol levels and absorption. Since being on the pump I have been able to stay on maintenance replacement dosing for the first time since being diagnosed. I can micro titrate the amount of hydrocortisone that I need when I feel low, and I don’t have to sit there guessing how much steroid I need with the pills or liquid formulation. Sometimes I only need 1 mg more to get my body back on track, whereas before the pump that was NOT an option.

Q-What made you decide to get on the cortisol pump?

A- I realised I wasn’t absorbing pills when hospitalized for most of the month of June 2020. The doctors helped me to transition to liquid hydrocortisone. This bought me some time before my stomach completely stopped working. I started to have to give more of the liquid to just remain stable and out of crisis. When I heard about the pump I knew I needed to be on it, as I was not stable at all on anything else we had tried.

Q- Was your doctor supportive of your decision to start pumping?

A- I had to see a different endocrinologist than my main one, as she had never done cortisol pumping but was fully supportive of the idea for me. Once I found an endocrinologist who knew how to program and monitor cortisol pumping than the one I was seeing, both endocrinologists and all of my other specialists, specifically my allergist and immunologists, were very supportive of the pump. One of my doctors literally told me they thought I was going to die last year because of how poorly my body was responding to other forms of treatment. I can say with confidence that I felt the same way. I couldn’t stop crying tears of relief and joy once I got on the pump. 

Q- Did your insurance cover your pump and supplies?

A- I am one of the fortunate ones where my insurance has covered my Medtronic and supplies. I think this is because I had been hospitalized almost every month in 2020, that or in the ED to treat an adrenal crisis. Literally anything to keep me out of the hospital. 

Q- What is something you wish you could tell all adrenal disease patients?

A- Something one of my favorite ED nurses told me when I was first diagnosed was that during her first year of diagnosis (she also has adrenal insufficiency) she thought she was going to die, but once she figured out what worked best for her body she has been fine ever since. I am thankful she told me that. I wish someone had told me that adrenal insufficiency treatment isn’t one size fits all. That you are going to feel overwhelmed. That steroids will make you gain weight. That this will be one of the hardest diseases for you to manage throughout your lifetime. But you WILL be able to manage it. To trust yourself, as the longer you live with the disease (or knowledge that you have the disease), the better you are going to know your own body and what to do to keep it functioning. No one is going to fully understand what you are going through, especially because it is a rare disease. Don’t be afraid to advocate for your health needs, and be sure to keep a log of symptoms and dosing.

Q-How has adrenal disease changed your life?

A- In a very strange way it has brought me so much closer to my family and specifically my mom. We were never the closest growing up but when I was diagnosed she essentially became my caregiver. I treasure this relationship so much. I have faced a lot of life or death situations in the past 4 years leading up to the diagnosis, so my perspective on what is important in life changed drastically. Before, I was so career driven and independent, but now I see that school will always be there and it doesn’t actually matter how long it takes to get through it. I learned quickly that the friends who are true friends and love you will be there for you no matter what, but I have lost a significant amount of friends due to having to deal with my own health. Overall I have been incredibly humbled and grateful since diagnosis, and have so much more empathy for others.

Q-Do you think the cortisol pump has improved your life?

A- 2020 I was so so sick, all of the time. Since getting on the pump I have finally begun healing. My doctors believe that I never had a consistent amount of cortisol in my body until I got on the pump, so I spent last year fighting for my life often because of malabsorption issues. Since starting the pump I finally have a basal cortisol level, making it possible to tackle a lot of my other health issues. If it were not for the pump I do not think I would be here today.

Q-What is a quote that you live by?

34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. – Matthew 6:34 
 9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. – Joshua 1:9

You can follow Lauren’s journey on her instagram or tiktok at the handle: @cortisol.queen

For more information on cortisol pumping visit the links below.

Podcast- Everything you need to know about Cortisol Pumping-https://anchor.fm/adrenal-alternatives-foundation/episodes/The-Cortisol-Pump–Everything-you-need-to-know-e7otis/a-at1ej4


Guide to the Cortisol Pump-https://drive.google.com/file/d/13BYRCaXSslDECc3bEuu15aWaN2yxx9fM/view

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

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

Donate to Adrenal Alternatives Foundation

Myths about the Cortisol Pump


Myth #1 “It is not available.”

The cortisol pumping method is a relatively unknown alternative treatment for adrenal insufficiency. Most doctors have never heard of it, but that does not mean it is not available. The use of infusion pumps to deliver medication is a common practice, mainly in the management of diabetes. However, the use of cortisol in infusion pumps is considered “off label” use. Cortisol pumping is available wherever infusion pumps are available. All you need is a doctor willing to manage your care, which involves he or she writing a prescription for an infusion pump, supplies and solu-cortef. Adrenal Alternatives Foundation works with patients internationally with cortisol pumping advocacy and we educate healthcare professionals all over the world on how to safely and effectively start the cortisol pumping method. We also work alongside other organizations to repurpose pumps and supplies to adrenal patients with our Pumps for Purpose program. Cortisol pumping is available internationally, wherever infusion pumps are available.

Myth #2 “It isn’t safe.”

Research has shown that cortisol pumping is an effective alternative treatment to oral steroids for the management of cortisol deficiency. We have compiled a comprehensive list of evidence showing that this method is safe.

A recent poll done by Adrenal Alternatives Foundation revealed that 97% of the patients surveyed stated that cortisol pumping improved their quality of life.

Adrenal insufficiency requires adequate cortisol replacement in the form of steroid medications. With the cortisol pumping method, patients can bypass the gastric pathway and absorb their life-sustaining medication better. This treatment is revolutionary for hypermetabolizers and for those with gastro-intestinal problems or malabsorption issues. The cortisol pumping method truly puts adrenal patients in control of their cortisol distribution in a way that steroid pills cannot. In situations of physical or emotional stress where “updosing” is needed, the pump can immediately administer a bolus, which is extra cortisol administered through the pump canula at the amount you select. Instead of having to wait for pills to metabolize, the cortisol can be absorbed faster and can help prevent adrenal crisis. Cortisol pumping is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on steroid replacement pills, being on the pump method may not be necessary to achieve quality of life.

Myth #3 “My insurance won’t cover it”

What your insurance will cover is completely dependent on your specific coverage plan and insurance company. If you are denied, you can always file an appeal. Visit this link to download the example appeal letter you can fill out with your information to appeal your insurance company’s denial.

Our foundation team also assists patients file insurance appeals has successfully battled countless insurance companies across the nation and can assist you in your fight for coverage.

It is also an option to cash purchase a pump and supplies specifically from companies such as Omnipod and Medtronic if you have a prescription from your overseeing physician.

Adrenal Alternatives Foundation has also aligned with the organization CR3 to help adrenal patients acquire pumps in a safe and legal manner. Visit this link to apply for pump assistance.

Myth #4 “My doctor said no.”

Finding a healthcare professional willing to work with this relatively unknown treatment option can be a challenge. You may have to “query” multiple physicians before you find one willing to manage your care on the cortisol pumping method.

In order to achieve this, it is best to prepare a compelling case and provide it to the physician before your appointment. Send research on the cortisol pumping method and your health records to the physician before your appointment so they are aware of your intentions before hand. We have created a pump proposal letter you can fill out with your information, explaining your diagnosis, failed treatments and desire to be on the pump. The doctor may or may not be receptive to your request and alerting them of your intentions beforehand may save you time, money and effort. Again, you may have to contact multiple physicians before finding one who is willing to manage the cortisol pumping method.

Our clinical team is also willing to speak with your current physician and provide them with guidelines on how to safely start the pumping method. If you would like our assistance, fill out our contact form and request a cortisol pumping consult.

Myth #5 “It isn’t legal.”

FDA approval is not necessary to safely and legally begin cortisol pumping under the care of a licensed physician. Use of the infusion pump for adrenal insufficiency is considered an “off label” treatment. Infusion pumps have long been approved for the administration of medications.

According to the Department of Health and Human Services Centers for Medicare and Medicaid Services Medicare Coverage Issues Manual Section 60-14 A: “6. Other uses of external infusion pumps are covered if the contractor’s medical staff verifies the appropriateness of the therapy and of the prescribed pump for the individual patient.”

In addition, according to the recently passed Right to Try Act, patients have legal rights to access to life-saving treatments which are not yet FDA approved.  

More information on cortisol pumping can be found on the cortisol pump advocacy tab on our website and also in the book A patient’s guide to managing adrenal insufficiency.

You can also listen to our podcast episode Everything you need to know about the Cortisol Pump! or download our Guide to the Cortisol Pump.

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

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

Donate to Adrenal Alternatives Foundation