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!

Can you donate blood with adrenal disease?

Donating blood is one of the most selfless acts a person can do, but when you have a life-threatening illness such as adrenal insufficiency, there are questions as to whether you are allowed to donate blood or not.

Can adrenal disease patients donate blood?

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The answer is complicated.

Some countries/territories allow blood donation from adrenal patients and others do not. It is ultimately dependent on the regional medical director’s decision of a particular organization.

According to the Pituitary Foundation, Addison’s disease is listed as a permanent deferral which means those with this diagnosis are permanently banned from donating blood.

The Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee states that anyone diagnosed with any form of adrenal failure “Must not donate.” 
When we searched the American Red Cross website for adrenal disease information, we found no search results that pertained to whether adrenal patients could donate or not.
You can review the full eligibility requirements here.
To answer, the original question, Can you give blood with adrenal disease?
It depends on where you live and what organization is accepting blood donations.
If you are eligible to donate in your area, remember it is also a personal choice.  You should discuss it with your doctor to determine your risks and benefits of blood donation. 

 

 

 

 

 

Sources:

https://www.mskcc.org/about/get-involved/donating-blood/additional-donor-requirements/medical-conditions-affecting-donation

https://www.pituitary.org.uk/information/living-with-a-pituitary-condition/donating-blood/

https://www.redcrossblood.org/donate-blood/how-to-donate/eligibility-requirements/eligibility-criteria-alphabetical.html

https://www.transfusionguidelines.org/dsg/wb/guidelines/ad003-adrenal-failure

 

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.

Interview with Adrenal Alternatives Affiliate- Lisa Baker

Interview with Adrenal Alternatives Foundation Guest Affiliate- Lisa Baker

Lisa CWC CNHP RNHP

 

Q- Please introduce yourself.

A- Lisa C. Baker, CNC, RNHP, CWC

I seem to have had several lives!  I was an Associate Editor of an International trade magazine for many years, and then as a Federally-enrolled Native American, I moved to the jurisdictional area of my tribal government and worked in the Language, History and Culture Department, also becoming the Director of the Museum and Tribal Historic Preservation Officer.  During this time, I was very involved with tribal ceremonial grounds, and worked with women’s medicine.  In preparation for retiring, I decided to go back to school and study alternative and holistic health so that when I finally retired, I could help people (especially adrenal patients) as much as possible!  I became certified as a Holistic Nutritionist, and also became registered as a Natural Health Practitioner.  I was working on my Naturopathic Internship with a licensed naturopath in Oklahoma, but when we moved back to Kansas, the legal requirements were different.  So, in order to continue helping people, I have just completed certification as a Wellness Coach.  I also was an international recording artist for many years, composing and recording under the name of Lisa LaRue 🙂  I have also been  ordained  for nearly 20 years, and have done weddings, funerals and other ceremonies!

Q- How were you diagnosed with AI?

A-  My mother had Congenital Adrenal Hyperplasia (CAH), so it was a concern as to whether or not my father was a carrier, thereby affecting me.  This was way back in the early 1960’s, so there were no DNA tests, etc.  As an infant, I had many problems requiring extra salt which was all they would do for salt-wasting children at the time.  I was always sick.  I missed many, many days of school weeks at a time, and my doctor would not even allow me to participate in Physical Education.  As I entered puberty, I would have huge menstrual periods that would last for weeks, but I’d only have them every 9 or 10 months.  I started growing sideburns and a moustache.  I also had my very first ovarian cyst which burst at age 17.  At that point, I saw an endocrinologist who knew it was adrenal right away when I had a consult with him.  After giving my history, he did all of the testing and verified I had 21-hydroxylase Congenital Adrenal Hyperplasia.  As is true with a number of CAH patients with this form, cortisol is not always low, but is cyclical.  However, he put me on daily dexamethasone which I took before bed, and within a few years I had developed Cushing’s Syndrome from overmedication with steroids.  It took a LONG time to get that resolved, as well as all of the terrible side effects.  Today, I am much healthier, and take fludrocortisone daily because my aldosterone levels are consistently <0 – 1.6, but I take hydrocortisone as needed for illness, and times I have just figured out that something is off.  I have had to inject about 2-3 times a year the last 8 years.  My endocrinologist has explained to me that they do not have much research on how CAH behaves after menopause, because there are not that many patients who reach an older age, so they’re not really sure how it changes, but it does!
My mother lived to be 65, but she had also had a bilateral adrenalectomy, which her doctor believed in the 1970’s was a cure for CAH.  I do know of several people in CAH support groups who are in their 60’s.  I am soon one of them!

Q-What is one piece of advice you would give to any adrenal disease patient?

A-  Know thyself.  What I mean by that, is each person is different.  Some people with adrenal insufficiency can run a mile and be fine, others can only do it if they updose first.  Yet another might not ever be able to dream of doing it.  Be aware of your body and when it has needs, because fulfilling those needs are the only way you can run your body safely.  You don’t wait until your car runs out of oil to give it more, or you will have damaged lots of parts.  That’s the way salt is.  And if you ran out of gas, it’s over, you’re not going anywhere.  And that’s the way cortisol is.  Know when your engine needs a rest, or clean filters, and when it CAN run a race, don’t overrun it and let it rest after.   Also, do not follow trendy diets.  Those are designed for healthy people.  Each illness adds a different dimension to what your body needs or doesn’t need.  Nutrition needs to be very tailored when dealing with any illness.
Can I give two?  Because my second piece of advice is just as important.  Don’t rely on the doctor’s pills for everything.  YES, we NEED cortisol and fludrocortisone if we want to live, but don’t fight your body.  If you are diabetic, you really know you shouldn’t eat carbs and sugars even though you’re taking insulin, right?  It makes you need MORE insulin, and makes your body have to fight even harder to get the effects of the insulin.  Cortisol is the same way!  Be mindful of other ways to compliment the steroid, and help your body manage the best it can!

Q-How has adrenal disease changed you as a person?

A- I’m pretty used to it, as I’ve had restrictions my entire life because I was born with it.  But I guess the biggest way it has influenced me is that knowing I could not only die at any time from an adrenal crisis gone wrong, or early because the CAH odds say so, has made me want to avoid drama, find peace within myself and others, and help people as much as I can.

Q-What do you find is the biggest challenge with adrenal disease?

A- There’s a bunch!!  Trying to get people to understand ‘it’s NOT adrenal fatigue!’  Trying to get people to understand when I need help (solu-cortef injection, or mega-electrolytes for example).  Finding endocrinologists who understand adrenal disease as many are just Diabetic and Thyroid doctors.  And worrying what I would do if I had an adrenal crisis and nobody was around me that understands how “I” need treatment.  My biggest frustration is that when our cortisol gets out of balance, we don’t realize how our behavior is at the time.  Lack of oxygen to the brain due to low blood pressure, sugars going wrong, organs starting their shut-down procedure – and instead of helping us, people get mad at us and then cause our situation to get worse.  It’s like giving cake to a diabetic.  I certainly wish there were a way to get people to understand that if you start behaving unlike your normal self, you need some intervention.  Not just for the sake of behavior, but to save you from organ damage or even death!

Q-If you could change one thing about adrenal care, what would it be?

A- Doctors allowing patients to direct their own treatment, and to include alternative methods or rather, non-textbook methods, if they work and are not harmful.  Many doctors go ‘by the book,’ and as Adrenal Insufficiency is relatively new to treatments (with fludrocortisone and hydrocortisone both being the original and still the only medication, I would like to see them more willing to be open to other solutions.  That’s the only way treatment for AI will advance like other conditions have.

Q-What is something you wish every endocrinologist understood?

A- That patients’ own experience is helpful in treatment, and that the main reason for being a doctor is to help someone.  If the textbook chapter didn’t cover it, that doesn’t mean it’s bad.  And to allow patients the ability to use methods that are not covered by insurance if they feel like paying for it themselves.  Of course, this involves politics, so …..

Q-Tell us about your book?

is a book that is appropriate for both patients of Addison’s Disease and all forms of Congenital Adrenal Hyperplasia.  In it, I discuss each illness and their differences, the testing that is helpful for each, how they are diagnosed, and more information to make AI understandable not only for the patient, but for caregivers, friends and family.  It continues and focuses on foods, vitamins and minerals, activities, and daily regimens for those with AI so that they get the most benefit from their doctor-prescribed treatments and hopefully enjoy a better quality of life.  It also serves as a guide to what you should be expecting from your doctor, as well as what you should be expecting from yourself.

Q-Tell us about your work with adrenal patients?

A- I do not treat adrenal patients, but I work with them on “Wellness.”  Wellness is not just physical, but mind and spirit, as well.  They are all interconnected.  And while we may be ill, we can still have a bit of Wellness.  I work with patients on helping them evaluate their symptoms and learn trends that may be warnings, help them evaluate their eating and nutrition status and how they can make changes, physical activity, and spiritual.  I help them make decisions on ways to get along with their body, have a positive outlook, and keep from fighting their medication with unhealthy behaviors.  Adrenal patients have to watch so many things!  For example, Lavender!  People love their lavender oil, and it is indeed lovely, but it also lowers cortisol.  So, if you are making any at all, it will reduce it and then you’ll have to take more meds.  I’ve known of people even going into crisis because of lavender in their pillows.  I am here to help them with wellness as a coach with a background in not only nutrition and healing, but as a lifelong adrenal patient.  I understand what they need, how they feel, and help guide them through it covering all of the basis to achieve a life of Wellness.
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Thank you Lisa Baker for sharing your story with Adrenal Alternatives Foundation!

For more information on her book, Living with All Forms of Adrenal Insufficiency: Not Fighting Your Body please visit the hightlighted link.