Advocacy

What is the Cortisol Pump?

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What is the cortisol pump?

Basically, the cortisol pump is a repurposed insulin pump that delivers solu-cortef instead of insulin.

The use of solu-cortef (injectable version of cortisol when mixed with saline) is placed in an insulin pump that is programmed to disperse cortisol according to circadian rhythm dosing by programming rates of basal delivery into the pump. The pump also has options to bolus for stress dosing.

This helps adrenal patients maintain better control of their cortisol levels by allowing them to get cortisol quicker instead of waiting until steroid pills metabolize through the stomach and finally enter the bloodstream.

This therapy bypasses the gastric system and is able to deliver cortisol in a more consistent way. With a pump, an adrenal insufficient patient can receive a constant supply of cortisol and will not suffer the ups and downs with oral cortisol replacement tablets. They are able to sleep through the night without having to wake up to take steroid pills.

This can be of great benefit to adrenal patients who are hypermetabolizers of cortisol. Some patients have to take medications more frequently than others due to their body’s high cortisol clearance rate. The pump is a great asset to these patients because they are no longer forced to take pills every couple of hours around the clock.

Side effects due to mal-absorption can be decreased and patients have been reported to have improved sleep, weight management, gastric issues and experience an overall improvement in their energy levels and sense of well-being as opposed to taking steroid tablets.

Professor Hindmarsh, of CAHISUS is a pioneer for this life changing treatment.

For more information on the medical information visit his website-http://www.cahisus.co.uk/pdf/USING%20THE%20PUMP%20METHOD%20IN%20ADDISON%27S.pdf

The pump is not a cure for adrenal disease and is difficult to obtain. This treatment is relatively an unknown in the United States and this foundation is actively working to raise awareness on this alternative treatment to managing adrenal insufficiency.

It is a difficult process but it IS POSSIBLE!  For more information please read our article on HOW TO GET ON THE CORTISOL PUMP.

If you feel you could benefit from the cortisol pump, speak with your endocrinologist but be prepared to hear “NO.”

Don’t lose heart!

There are doctors in the USA who will manage this treatment and we hope to continue raising awareness so that one day it will be as available to adrenal patients as it is to diabetics.

We’re here to lead all adrenal patients to every adrenal alternative!

 

 

 

 

 

Advocacy

Adrenal Awareness Care Package Program

We are so excited to announce the Adrenal Awareness Care Package Program!

The Adrenal Awareness Care Package program is run by the Adrenal Alternatives Foundation and provides adrenal patients with comforting products and supplies as well as encouraging and educational resources to improve their lives as they fight this devastating disease.

To qualify, you must live in the United States and have been diagnosed with an adrenal disease.

(We hope to branch out to be able to ship care packages internationally at some point but for now only can ship in to the USA due to costs)

Applications will be considered by the Foundation.

Our Care Package program will begin taking applications now through April of 2019 and we will begin our package distribution in the summer of 2019.

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Applications for the following year will be accepted again in January of 2020.

To apply, please fill out the application at the link below.

https://docs.google.com/forms/d/e/1FAIpQLScgu4TctP0LcrqEu4KQKU-krHAG7wPehABGgqCXTJ8h79RCcw/viewform?usp=sf_link

Wishing you all comfort and cortisol,

The Adrenal Alternatives Foundation

Advocacy

Understand your Adrenals Series

One of the main goals of this Foundation is to bring awareness to Adrenal Disease.

We are pleased to announce we have collaborated with the healthcare education site- ZUBIA ( https://zubialive.com/ )  to teach a 4 part webinar series designed to educate the world on the adrenals, what they do and bring awareness to adrenal issues.

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The videos are posted below-

Episode 1- What do the Adrenals do?

Episode 2- Adrenal Fatigue VS Adrenal Insufficiency

Episode 3-  Types of Adrenal Diseases/Problems

Episode 4- Keeping your Adrenals Healthy

Advocacy

Recently passed California bill harmful to pediatric adrenal disease sufferers

 

The SCR- 110 Sex Characteristics Bill is a bill California presented that was amended in the Senate on May 9 2018.

The context of the bill is coming from the wake of the gender queer and transgender issue. This bill prevents parents from making a decision on whether a child should be deemed male or female In those born with ambiguous genitalia.

Where this is concerning is there are genetic deformities and congenital diseases that are negatively impacted by this bill.

In these specific cases, this bill negatively impacts children born with diseases such as congenital adrenal hyperplasia. CAH is a life threatening disease which can cause children to be born with ambiguous genitalia, hormonal issues and requires life long steroid cortisol replacement medications.

Most pediatric endocrinologists agree that when CAH causes genetic abnormalities or genital mutation, these cases require medical intervention.

The danger of this bill is that these children will not receive the care that they need because of laws passed by politicians NOT educated informed physicians regarding medical care.

The concerning part is when decisions of parents and physicians are taken away by legislators who have no education regarding the dangers of improper medical treatment with diseases such as CAH.

It is understood, the concept of not wanting to cause someone to have gender dysphoria or to be forced to choose a gender; but in this case these specific medical issues need to be addressed.

This bill takes autonomy away from parents and physicians to make that choice.

Children, especially females born with CAH typically have ambiguous genitalia that needs to be corrected. These children can also suffer from hormonal issues such as polycystic ovarian syndrome.

This bill will inhibit the proper care of these children.

The treatment of CAH has nothing to do with gender identification.

Bills like this take the power of medical decisions out of parent’s and medical professional’s hands.

Below is a brief excerpt of the bill so you can fully understand the context.

This bill was amended by Senator Wiener, and is as follows-

This measure among other things called upon stakeholders in the health professions to protect children born with variations of sex characteristics.

Whereas between 1% and 2% of individuals born with variations of sex characteristics; which may include differences in genital anatomy from a hormonal variations or internal reproductive structure: Whereas intersex refers to the rare variety of physical indicators that indicate the differences which occur about the same frequency as do green eyes.

Whereas the majority of babies born with these variations are healthy and do not require medical or other interventions related to sex characteristics until puberty.

Beginning in the 1950’s physicians in the United States began performing irreversible surgery on intersex infants without medical justification and attempt to surgically or hormonally force them to conform to what the  physician perceived as a typical male and female body.

Source- https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201720180SCR110

So what can we do about it?

The Judiciary Committee phone number is (916) 319-2334.

It is imperative that we have representation from patients, family members and medical professionals to stop this bill.

This is not an attack on the gender-queer or transgender population, this is a protection for children born with a serious, life threatening, incurable disease.

 

This bill states- “California should serve as a model of competent and ethical medical care and has a compelling interest in protecting the physical and psychological well-being of minors.”

 

If that be the case, I urge Senator Wiener, Senator Glazer and Assembly Member Limón to reconsider this bill and amend it to protect children with CAH.

Please call and request an amendment to the SCR-110 Sex Characteristics Bill in favor of children born with CAH.