YOU’RE INVITED! GoodHormoneHealth Webinar on Lifestyle Medicine for Patients with Endocrine Problems With Eddie Ramirez, MDDr. Theodore Friedman (The Wiz) will be joined by Eddie Ramirez, MD
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Year: 2022
12 Days of Cortisol Christmas Event
“We invite you to join us for our opening 12 Days of Cortisol Christmas event, “Overcoming Fatophobia” with Dr. Karen Thames.
Dr. Karen, a licensed clinical psychologist and founder of the EPIC Foundation, has battled Cushing’s disease and is now adrenal insufficient as a result. She has faced the battle of weight stigma both professionally and personally. In this interview, she bravely shares her story and advice on how to overcome #fatphobia in #chronicillness.
Adrenal Alternative’s 12 days of Cortisol Christmas is an event where we give back to the adrenal community during the Holiday Season.
Throughout the 12 days, we will be giving away adrenal awareness merch, hosting interviews with patients and professionals, and sharing helpful resources.
Even though patients must fight the war that is #adrenalinsufficiency, we want to let you know that you are supported by an army of adrenal warriors and you are not alone.”
~Adrenal Alternatives Foundation
Clinical Trial: SPI-62 as a Treatment for Adrenocorticotropic Hormone-dependent Cushing’s Syndrome (RESCUE)
Brief Summary:
This is a randomized, placebo-controlled, crossover study of SPI-62 in subjects with ACTH-dependent Cushing’s syndrome. Subjects will receive each of the following 2 treatments for 12 weeks: SPI-62 and matching placebo
| Condition or disease | Intervention/treatment | Phase |
|---|---|---|
| Cushing’s Syndrome ICushing Disease Due to Increased ACTH Secretion Cortisol ExcessCortisol; Hypersecretion Cortisol Overproduction Ectopic ACTH Secretion | Drug: SPI-62 Drug: Placebo | Phase 2 |
This is a multicenter, randomized, placebo-controlled, Phase 2 study to evaluate the pharmacologic effect, efficacy, and safety of SPI-62 in subjects with ACTH-dependent Cushing’s syndrome. Each subject who provides consent and meets all inclusion and exclusion criteria will participate in 3 periods: a 28-day screening period (Days -35 to -8), a 7-day baseline period (Days -7 to -1), and a 24-week treatment period (Day 1 of Week 1 to Day 168 ± 3 days of Week 24). Up to 26 subjects will be enrolled with the aim that 18 subjects with Cushing’s disease will complete the study. Subjects will receive each of the following 2 treatments for 12 weeks: SPI-62 and matching placebo.
| Study Type : | Interventional (Clinical Trial) |
| Estimated Enrollment : | 26 participants |
| Allocation: | Randomized |
| Intervention Model: | Crossover Assignment |
| Intervention Model Description: | Staggered parallel crossover |
| Masking: | Quadruple (Participant, Care Provider, Investigator, Outcomes Assessor) |
| Primary Purpose: | Treatment |
| Official Title: | SPI-62 as a Treatment for Adrenocorticotropic Hormone-dependent Cushing’s Syndrome |
| Actual Study Start Date : | March 1, 2022 |
| Estimated Primary Completion Date : | March 15, 2023 |
| Estimated Study Completion Date : | August 15, 2023 |
More info at https://clinicaltrials.gov/ct2/show/record/NCT05307328
Webinar: Best Practices for the Management of Individuals with Cushing’s Disease
First of its kind CME webinar on #CushingsDisease for #endocrinologists and other clinicians treating patients with #Cushings
Aug. 2, 2022 / PRZen / HAZLET, N.J. — In this CME Webinar, #endocrinology experts in the management of #CushingsDisease will describe best practices for the diagnosis and treatment to improve long-term outcomes for patients..
SPEAKERS:
Maria Fleseriu, MD
Professor of Medicine and Neurological Surgery
Oregon Health & Science University
Irina Bancos, MD
Associate Professor of Medicine
Mayo Clinic
Voxmedia LLC gratefully acknowledges the educational donation provided by Recordati Rare Diseases, Inc.
This educational activity is intended for #endocrinologists and other clinicians who manage patients with cushing’s disease.
Voxmedia LLC is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.
Voxmedia LLC designates this webinar activity for a maximum of 1.00 AMA PRA Category Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Nurse practitioners may participate in this educational activity and earn a certificate of completion as AANP accepts AMA PRA Category 1 Credits™ through its reciprocity agreements.
The National Commission on Certification of Physician Assistants accepts AMA PRA Category 1 Credits™ from organizations accredited by the ACCME.
For additional CME activities and online cme courses visit CMEPlanet. #endocrinologist #EndocrinePractice #Cushings #Cushing #ThinkCushings #CushingsAwarenessDay #pituitary #TheEndoSociety #ENDO2022
Follow the full story here: https://przen.com/pr/33469903
Human Growth Hormone Study
Research opportunity for Human Growth Hormone Deficiency caregivers of adolescent patients. This is a 75 min web-assisted phone interview, and the compensation is $125.
Please sign up at the link below to receive an email invite to the survey.
🦓 Day 28, Cushing’s Awareness Challenge 2022
Over the years, we went on several Windjammer Barefoot Cruises. We liked them because they were small, casual and were fairly easy on the wallet.
They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever. One trip we were supposed to go to Saba but couldn’t make port. A lot of people got off at the next port and flew home.
The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip. We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride.
The last trip we took with them was about two years before I started having Cushing’s problems. (You wondered how I was going to tie this together, right?)
The cruise was uneventful, other than the usual mishaps like hitting docks, missing islands, and so on. Until it was a particularly rough sea one day. I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery. I fell and cracked the back of my head on the curved edge of a table in the dining area. I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery, I got some morphine.
We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all.
The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).
All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.
The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome by Jim Carrier. The ship, which was sailing in the center of the hurricane, experienced up to 50-foot (15 m) waves and over 100 mph (160 km/h) winds, causing the Fantome to founder off the coast of Honduras.
This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.
I read this book and I was really moved by the plight of those crew members.
I’ll never know if that hit on my head contributed to my Cushing’s but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.
Research opportunity for Acromegaly and/or Human Growth Hormone Deficiency (GHD) Patients and Caregivers
We have an opportunity for you to take part in a Acromegaly and Human Growth Hormone Deficiency (GHD) Study for patients and caregivers. Our project number for this study is IQV_6382.
Project Details:
- Survey is 20-minutes long
- $35 Reward
Things to Note:
- We recommend using the web browsers Google Chrome or FireFox
- Study is open to patients and caregivers
- Please do not share study links
- One participant per household only
- Want to share this opportunity? Let us know and we can provide a new link
- Please use a laptop/computer ONLY. No smartphones or tablets – Preliminary questions are mobile friendly!
- Save this email to reference if you have any questions about the study!
- If you have any problems, email lejla.zonic@
rarepatientvoice.com and reference the project number.
If you are interested in this study, please sign up for Rare Patient Voice here: https://rarepatientvoice.com/
Thanks as always for your participation! Please be aware that by entering this information you are not guaranteed that you will be selected to participate. As always, we do not share any of your contact information without your permission.
⁉️ Myth: “You should be all better by now!”
Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.
Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).
The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).
However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).
According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.
It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).
For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).
Here are some ideas for helping the chronically ill person and family:
• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are
• Make short visits to not overtire or over stimulate the patient
• Send a card or make a short phone call to the sick person
• Look for ways to help with young children
• Send a small gift
• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”
• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).
Reference: Dyer, W.G. (1990). Chronic Illness. In R. L. Britsch & T.D. Olson (Ed.), Counseling: A guide to helping others, volume 2, 250-259.
Please take the time to view this video on “Chronic Illness versus Normal Illness” and share with your loved ones:
🦓 Day 27, Cushing’s Awareness Challenge
I first saw a similar image to this one with the saying Life. Be in it at a recreation center when my son was little. At the time, it was “Duh, of course, I’m in it”.
The original image was a couple of males, a couple of females, and a dog walking/running. No folks in wheelchairs, no older folks, and certainly no zebras.
It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world. It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.
A dear friend who had not one, but two forms of cancer was traveling throughout Europe for the first time after her husband’s death wrote:
Some final words before I turn in for the night. If there is a spark of desire within you to do something which is not contrary to God’s Holy Law, find a way to make it happen. All things are possible and blessings abound for those who love Him. Life is such an adventure. Don’t be a spectator – live every single moment for Him and with Him.
Somedays, it’s hard even getting up in the morning but I’m trying. Pre-COVID I took Water Aerobics for People with Arthritis and I actually went to class three times a week.
After COVID, I took the stuff I learned there and did it 3 times a week as part of “water walking” by myself or with my DH. I got a “part-time” job several years ago and I’m teaching piano online. We had plans for a cruise to Norway which COVID made us reschedule for Alaska, which wass to be rescheduled…again.
I’ve recently started playing the balalaika with an orchestra even though I never even touched one before.
This is the one and only life I’ll ever have and I want to make the most of it!
⁉️ Myth: “Each Person Requires the Same Dose of Steroid in Order to Survive…
Myth: “Each person requires the same dose of steroid in order to survive with Secondary or Primary Adrenal Insufficiency”
Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.
After a Cushing’s patient has surgery, he/she goes from having very high levels of cortisol to no cortisol at all. For pituitary patients, the pituitary, in theory, should start working eventually again and cause the adrenal glands to produce enough cortisol. However, in many cases; the pituitary gland does not resume normal functioning and leaves a person adrenally insufficient. The first year after pit surgery is spent trying to get that hormone to regulate on its own normally again. For a patient who has had a Bilateral Adrenalectomy (BLA), where both adrenal glands are removed as a last resort to “cure” Cushing’s; his/her body will not produce cortisol at all for his/her life. This causes Primary Adrenal Insufficiency.
All Cushing’s patients spend time after surgery adjusting medications and weaning slowly from steroid (cortisol) to get the body to a maintenance dose, which is the dose that a “normal” body produces. This process can be a very long one. Once on maintenance, a patient’s job is not over. He/She has to learn what situations require even more cortisol. You see, cortisol is the stress hormone and also known as the Fight or Flight hormone. Its function is to help a person respond effectively to stress and cortisol helps the body compensate for both physical and emotional stress. So, when faced with a stressor, the body will produce 10X the baseline levels in order to compensate. When a person can not produce adequate amounts of cortisol to compensate, we call that Adrenal Insufficiency. If it gets to the point of an “Adrenal Crisis”, this means that the body can no longer deal and will go into shock unless introduced to extremely high levels of cortisol, usually administered through an emergency shot of steroid.
There are ways to help prevent a crisis, by taking more steroid than the maintenance dose during times of stress. This can be anything from going to a family function (good stress counts too) to fighting an infection or illness. Acute stressors such as getting into a car accident or sometimes even having a really bad fight require more cortisol as well.
It was once believed that everyone responded to every stressor in the exact same way. So, there are general guidelines about how much more cortisol to introduce to the body during certain stressors. For instance, during infection, a patient should take 2-3X the maintenance dose of steroid (cortisol). Also, even the maintenance dose was considered the same for everyone. Now a days, most doctors will say that 20 mg of Hydrocortisone (Steroid/Cortisol) is the appropriate maintenance dose for EVERYONE. Now, we know that neither is necessarily true. Although the required maintenance dose is about the same for everyone; some patients require less and some require more. I have friends who will go into an adrenal crisis if they take LESS than 30 mg of daily steroid. On the other hand, 30 mg may be way too much for some and those folks may even require LESS daily steroid, like 15 mg. Also, I want to stress (no pun intended) that different stressors affect different people differently. For some, for instance, an acute scare may not affect them. However, for others, receiving bad news or being in shock WILL put their bodies into crisis. That person must then figure out how much additional steroid is needed.
Each situation is different and each time may be different. Depending on the stressor, a person may need just a little more cortisol or a lot. Every person must, therefore, learn their own bodies when dealing with Adrenal Insufficiency. This is VERY important! I learned this the hard way. As a Clinical Psychologist; I assumed that my “coping skills” would be enough to prevent a stressor from putting me into crisis. That was FAR from the truth! I have learned that I can not necessarily prevent my body’s physiological response to stress. People often ask me, “BUT you are a psychologist! Shouldn’t you be able to deal with stress?!!!!” What they don’t realize is that my BODY is the one that has to do the job of compensating. Since my body can not produce cortisol at all, my job is to pay close attention to it so that I can take enough steroid to respond to any given situation. We all have to do that. We all have to learn our own bodies. This is vitally important and will save our lives!
To those we have lost in our community to Adrenal Insufficiency after treatment of Cushing’s, Rest in Peace my friends! Your legacies live on forever!
~ By Karen Ternier Thames