🎬 VIDEO: ‘Subclinical’ Cushing’s syndrome needs new name

In this video exclusive, Endocrine Today Editorial Board Member Maria Fleseriu, MD, FACE, professor of neurological surgery and professor of medicine in the division of endocrinology, diabetes and clinical nutrition in the School of Medicine at Oregon Health & Science University and director of the OHSU Northwest Pituitary Center, discusses why mild Cushing’s syndrome matters.

In the past mild autonomous Cushing’s has been referred to as “subclinical Cushing’s syndrome.”

“What is subclinical about a patient that has, for example, cardiovascular disease and osteoporosis?” Fleseriu said.

She describes how to screen for and treat mild Cushing’s syndrome in patients with adrenal incidentalomas.

Watch the video for more.  If it doesn’t show up, please click here.

From Helio

⁉️ Cushing’s Myths and Facts: It is MY fault that I got Cushing’s…

Myth: “It is MY fault that I got Cushing’s. I did something wrong that caused me to be sick! If I would have just done XYZ, this would not be happening to me!”

myth-busted

Fact: This is a very controversial topic because we don’t like to talk about it. However, many people struggle with this myth. We NEED to dispel this myth my friends! Patients themselves assume responsibility, accountability, and self blame for becoming ill.

To compound all of that, patients are often told by loved ones, family, and sometimes even their churches or other supports that there is something that THEY could be doing or haven’t done that has caused their declining health. “If you would just follow that raw food diet, then all of your symptoms would go away”, “Juicing is the answer! I told you to juice and you wouldn’t get those tumors!”, Sometimes, you are told that if you would just pray harder or have greater faith, then there is no way that you would be sick right now. And my absolute favorite, “you are just too obsessed with being sick and having Cushing’s!  Stop thinking that you have it and it will go away!”.

Now, don’t get me wrong, I find value in “positive thinking” and affirming health, wealth, and all kinds of great things. This helps build up strength and personally keeps me motivated, especially during the times that I feel like absolutely throwing in the towel and giving up!

However, I am NOT the reason and YOU are not the reason for this war with this dreadful disease. What many people don’t understand is how tenacious, brave, courageous, and INDOMITABLE you are! Cushing’s patients do not just get surgery and then everything is magically OK.

Many patients have to go through multiple surgeries, sometimes radiation, sometimes years of testing to find the ultimate source of the disease, even after having several organs messed with. Even after patients obtain their “cure”, they are faced with residual and lingering negative effects of the illness, other hormone dysregulation issues, and the anxiety and fear of a recurrence which is based in absolute reality.

There are people, like myself, who are in remission from Cushing’s, BUT we now have Addison’s Disease/Adrenal Insufficiency as a result of removing vital organs in order to save our lives from Cushing’s. So, are we to think that Adrenal Insufficiency is ALSO our faults every time we near death after an adrenal crisis?! NO! NO! NO!

This is NOT your fault! This is NOT your doing! STOP blaming yourself! The best you can do is to FIGHT! Take an empowered stance by saying “NO” to those who won’t listen. Say “NO” to those who project blame onto you and tell you that this is just a “fat person’s excuse to stay fat”. You are not just a “fat person”! YOU are an amazing person who is fighting for your life!

Let me be clear that this blaming is common and we all do it. In my “5 stages of Loss” series on Youtube; I address the “Bargaining” stage of loss, in which we assume responsibility for getting sick or even for getting better.

Everyone should watch this to understand why and how we do this:

Remember, you are a survivor! YOU are Indomitable!!! This is NOT your fault! You WILL overcome!

🕺Cushing’s DanceOff Challenge: Courtney

 

 

 

This kid really knows how to dance, hmm?!?

Reward her hard work by sharing this video, and helping raise awareness for the following charities!

The rules are simple – Play or Pay (or share! 😉 ) If you want to donate to one of the groups we’re highlighting, here’s the list!

—– April Awareness —–

1. Cushings: Cushing’s Help http://cushings-help.com/

2. Adrenal Insufficiency: NADF https://www.nadf.us/

3. Autism: Autistic Self Advocacy Network! https://autisticadvocacy.org/

4. Mental Health: National Suicide Prevention Hotline https://suicidepreventionlifeline.org/ National Alliance on Mental Illness https://www.nami.org/

—– May Awareness —–

5. Chronic Pain: Chronic Illness Advocacy And Awareness Group (CIAAG) https://www.ciaag.net/

6. Fibro: National Fibromyalgia And Pain Association https://fibroandpain.org/ 7. EDS: Ehlers Danlos Society https://www.ehlers-danlos.com/ Or to help us help others, you can donate to The EPIC Foundation: http://www.EPICtogether.org

🕺Cushing’s DanceOff Challenge

 

Welcome to our #DanceOff challenge video!

The rules are simple – Play or Pay (or share! 😉 )

If you want to donate to one of the groups we’re highlighting, here’s the list! —

— April Awareness —–

1. Cushings: Cushing’s Help http://cushings-help.com/

2. Adrenal Insufficiency: NADF https://www.nadf.us/

3. Autism: Autistic Self Advocacy Network! https://autisticadvocacy.org/

4. Mental Health: National Suicide Prevention Hotline https://suicidepreventionlifeline.org/ National Alliance on Mental Illness https://www.nami.org/

—– May Awareness —–

5. Chronic Pain: Chronic Illness Advocacy And Awareness Group (CIAAG) https://www.ciaag.net/

6. Fibro: National Fibromyalgia And Pain Association https://fibroandpain.org/

7. EDS: Ehlers Danlos Society https://www.ehlers-danlos.com/

Or to help us help others, you can donate to The EPIC Foundation: http://www.EPICtogether.org

🎬 Video: Growth Hormone Supplementation May Contribute To Successful Pregnancy For Women With Hypopituitarism

In this video exclusive, Maria Fleseriu, MD, professor of neurological surgery and professor of medicine in the division of endocrinology, diabetes and clinical nutrition in the School of Medicine at Oregon Health & Science University and director of the OHSU Northwest Pituitary Center, discusses management of hypopituitarism during pregnancy and an upcoming study of effects of growth hormone supplementation.

Successful in vitro fertilization and even natural pregnancy are possible for women with hypopituitarism, according to Fleseriu.

“Our job as endocrinologists is to make sure that we’re focusing on replacing all the pituitary hormones at the right level,” she said.

Fleseriu outlines considerations for assessing hormone levels and determining which should be supplemented — before, during and after pregnancy — for a healthy delivery and healthy baby. GH may be one of these, she said, despite its off-label use.

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🎬 Endoscopic Transsphenoidal Approach for Pituitary Tumor Resection

Please be advised that this video contains graphic footage of surgery.

This video depicts an endoscopic transsphenoidal pituitary approach for a patient with a non-functioning macroadenoma. The surgery was performed by Dr. Garret Choby (Otolaryngology) and Dr. Jamie Van Gompel (Neurosurgery).