Celebrating Rare Disease Day 2020

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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!

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Rare Disease Day is February 29, 2020

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!!

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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!

Exciting Announcement

As promised, we have an exciting announcement!

Adrenal Alternatives Foundation was created to help all adrenal disease patients find better quality of life. We are actively working to make sure treatment options are available to all adrenal insufficiency sufferers.

Access to the cortisol pump treatment is limited and this foundation is dedicated to helping people establish care and maintain pumps/supplies to achieve this life changing treatment.

In addition to our long term solutions for this issue, we are pleased to announce we have found a solution to eliminate the “black market” necessity for gaining access to pumps. The days of scouring eBay, craigslist and facebook for pumps and supplies are now over!

We are pleased to announce our affiliation with CR3, which is an organization dedicated to placing pumps and supplies in the lives of people who need them.

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Founders Winslow E. Dixon and Charles Ray III (pictured above) have created a program which combines the resources of both organizations in order to supply pumps to adrenal disease patients in a safe and legal manner.

To apply click the highlighted text.

You can also discover more information on cortisol pumping on our website.

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This is just one step into bettering the lives of future adrenal disease patients.

Change is coming for Adrenal Disease!

Stay tuned for updates!

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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. EIN: 83-3629121

Is hyperbaric oxygen therapy safe with adrenal disease?

Hyperbaric oxygen therapy is an alternative treatment used to promote healing. With this treatment, a patient is placed in a hyperbaric oxygen therapy chamber, in which the air pressure is increased to higher than normal air pressure so that the patient’s lungs can absorb more oxygen.
The pressurized oxygen expelled within the chamber is believed to help your blood carry more oxygen and therefore promote healing and wellness.
Hyperbaric oxygen therapy increases the amount of oxygen the blood can carry. It is believed this increase in blood oxygen temporarily restores normal levels of blood gases and allows tissue function to promote healing and fight infections.

Hyperbaric oxygen therapy is considered a generally safe procedure, but this treatment does carry risks for adrenal disease patients.

It is important to thoroughly research any treatment, medication or alternative therapy and discuss it with your doctor before you begin any new regiment.

It is the objective of the Adrenal Alternatives Foundation to educate all adrenal patients on the risks and benefits of all possible treatments. Upon our research, we discovered the risks of hyperbaric oxygen therapy as it pertains to adrenal insufficiency. Below are a few extracts from two studies that address these concerns. Further reading/studies are in the sources at the end of this post.

(NOTE- There is no cure for adrenal insufficiency, except in the cases of steroid induced adrenal suppression. Never discontinue your steroid medication. Any alternative treatment/medication/therapy that claims to cure adrenal insufficiency is false.)

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Abstract of the Undersea & Hyperbaric Medical Society 2008 Annual Scientific Meeting June 26-28, 2008 Salt Lake City Marriott Downtown, Salt Lake City, Utah.

RESULTS: The attendant with Addison’s disease was found to have a drop from a morning level of 16.5 ug/dl to a critical level of 1.4 ug/dl. Subsequent testing without HBOT showed a lesser, non-critical drop of 29.1ug/dl to 9 ug/dl (normal range for the circadian cycle).

US National Library of Medicine National Institutes of Health – Effect of hyperbaric conditions on plasma stress hormone levels. Department of Anesthesiology, Turku University Hospital, Finland.

Cortisol levels decreased significantly (P = 0.001) during the treatments. No significant changes were found in other analyzed hormones.

It is important to be aware that hyperbaric oxygen therapy has been shown to decrease serum cortisol levels, therefore making this treatment a concern for those with adrenal disease.

Discuss any treatments, alternative therapies and medications with your doctor before trying any new regiment.

If you are a cortisol pump user, you will not be able to have your pump within the hyperbaric chamber to administer your cortisol. Due to the high oxygen concentration, any battery operated devices are a fire concern.

If you are considering any alternative therapies, please research them thoroughly and discuss them with your doctor before you begin any medication, treatment or regiment.

Sources:

https://www.ncbi.nlm.nih.gov/pubmed/10372427

http://archive.rubicon-foundation.org/xmlui/handle/123456789/7867

https://www.todayswoundclinic.com/articles/oxygen-wound-healing-going-beyond-hyperbaric-therapy

https://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/about/pac-20394380

The Crucial Role of Oxygen for Health

https://www.ncbi.nlm.nih.gov/pubmed/20737929

How does Hyperbaric Oxygen Therapy (HBOT) help with Stress?

https://www.canr.msu.edu/news/understanding_cortisol_the_stress_hormone

https://www.todayswoundclinic.com/articles/oxygen-wound-healing-going-beyond-hyperbaric-therapy

Maja’s Adrenal Disease Story

Maja Bergma shares her amazing story of diagnosis and her quest to spread awareness on adrenal disease!

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First when diagnosed, I was happy! I thought, Now they can finally fix me! I can get my energy back and catch up on everything in my life that just got put on hold over the years I felt so sick. But I soon realized that fixing me, was not so simple. I was hoping to be able to work/study/travel – do all those things again.

Let’s just say that I got kind of a reality check, realizing that just because you get a diagnosis does not mean that you can get fixed up and well so easily. I feel like the medication keeps me alive, but it’s not enough to let me really live!

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Before my diagnosis, I used to be kind of a high achiever.   I was the one always helping others and now I´m the one needing help.  This disease has turned my world kind of upside down. I had to re-evaluate my self-worth/self-image. I am still learning to be kind to myself, and still working on knowing how to save cortisol/energy.

In the beginning the stress of feeling bad for being sick, feeling like a bad wife/mother for not being able to do all the things I want to do was not helping me feel better!  It was a tax on my soul and like an energy thief.

I see that this is a struggle for many in the support-groups too! You are not alone! I’m now trying to be my own best friend. I don’t need to be so hard to a friend having a rough day. I would not be so hard on another person in the same situation, so I need to be kind to myself too! This is my new way of thinking.
I frequently tend to get fevers, when I exert myself – and that´s rough when one need to up-dose for that. My doctor, said I need to come to peace with that that´s, the way my body works. So I´m working on acceptance, but still fighting for more help, better treatment options.

I had to stop driving my car, and that´s sad but there was no other alternative. This summer we bought a new, smaller home because of my situation. Our new home is  without stairs and no large garden. We are currently getting it altered to work even more practically for me. For example, with low blood pressure, I can´t safely carry laundry up the stairs from the basement, and showering takes a lot out of me so I need to sit and do that to not fall when my bp falls and I feel faint. I don´t want to hurt myself any more than necessary. Our new home works better with my low energy level and my bp trouble.
I realize I can’t live on false hope any more – that I will feel like I used to soon. I have to choose to live my life that functions well for me right now. I feel like I can win a little every day!  I do hope to get to try a pump in my lifetime, and if I can’t,  I do hope that other AI generations after me, will get the chance – if they don´t work well on steroid pills.
I need to rest and sleep a lot. I see many not doing well on HC, needs to sleep a lot too. I try to do things, rest a bit, and do some more. I try to pace myself to get things done. I highly recommend pacing for those of you who struggle, just like me.Also a slow-cooker, made my cooking less dangerous – with lower risk of burning food or the house down! Haha!
My warmest recommendations for other tired AI sufferers needing to get a feeling of being able to win, SMILE! Currently working on trying to help my whole body heal – since being sick for so long without diagnosis. I have been so broken down and know what its like to feel totally broken. I now realize the war that was goes down on the inside of me and why I was get tired on a kind of a cellular level.
I have needed to learn to be more kind to myself. I realize that this disease, I can’t fight with force (that only leaves me exhausted) – it´s more about outsmarting it… So now I´m working on that. Trying to get me the best help!22008247_1520918134596484_4646301107067754700_n.jpgI believe that other diseases in combination with AI, makes it harder to manage it. We see this proved when we look at how the cortisol curve looks in those who have normal adrenal function when they do get sick. I believe this is very important information for better treatment in those with many diseases at once.
In addition to AI, I have upset stomach problems, but they have become better after I get celiac diagnosis and got that treated. But I still get sick to my gut in the gaps between medications. My bp often seems to run low so I recently started to use a walker. I use my husband for support for the longest time, at first – but I want to be able to walk around with out him also so I don’t fall when my bp suddenly decides to drop.
I really hope to see more research about cortisol. Prof Hindmarsh has done some amazing things in his research, I just hope we, all over the world – soon can reap the benefits of his knowledge on sick-rates, dosing and general pumping! Since I have seen that the quality of life so much improves for those going on the pump, who do not feel well on steroid pills alone. I wish that there would be more awareness, to make changes for the better for all AI sufferers. Prof Hindmarsh – to me is like a superhero, he is doing this research for the kids. I can’t even imagine being a kid, with low cortisol and what that would do to a family. In Sweden there is a book coming out soon, about kids with AI and their families – the book will be called “ständigt på vakt” translates to “Constantly on guard”. Happy that the book will come out and rise AI awareness!
Well I must say, even if my life is far from optimal – I´m so grateful, to be alive!  I know that today might not be optimal, but as long as I´m alive, I at least might have a chance of a better life. I hope get a pump and get more on top of this! As long as there is life – there is hope! Heard a woman on her 3 day of pumping saying she felt healthy, and she never did that on pills – I wish that one day I can say that… I feel healthy!
It’s with a sad heart, I have seen too many in the support-group die these last months. And a woman here in Sweden died before getting diagnosed and treated. She was tested but did not get help fast enough. This is depressing and shows how much we need to raise awareness around AI even today in these modern times! We must work on awareness, in memory of those in the AI community, who left us too soon: for our-self and hope for a long and more healthy life; and for those who will come after us!
Maja created the collage below to help raise awareness on adrenal disease! 48607316627_1db35b4b4c_o.jpgThank you Maja for bravely sharing the truth of your battle with adrenal disease. We will make sure YOU have a pump and your life improves.

 

That’s what Adrenal Alternatives Foundation is here for, to lead patients to ALL adrenal alternatives. ❤

 

 

Cortisol Pumping Survey

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Calling all cortisol pumpers!

Adrenal Alternatives Foundation is conducting research on the current method of cortisol pumping in order to further technology developments to manage adrenal insufficiency.

We have created a short survey to collect information for future advancements.  Please click the link below to participate in the cortisol pumping survey.

 

https://docs.google.com/forms/d/e/1FAIpQLSeSrF2vsx9zlYtsHKumTOrTw9cqg8vZmnliRqUcEVfWKOHoFw/viewform?vc=0&c=0&w=1&fbclid=IwAR1L88KDRMdOZBSHrwSl6jkYO7NM2rEYod_8s5sgTZLLsKAMAliFhKRseNw

 

Thank you for your continued support of Adrenal Alternatives Foundation.

We cannot further our mission of Education, Advocacy and Encouragement without members like you!

 

 

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Adrenal Alternatives Foundation is registered with the IRS as a 501(c)3 nonprofit organization. EIN: 83-3629121.  All donations are tax deductible.