Can You Help?

Research opportunity for Acromegaly and/or Human Growth Hormone Deficiency (GHD) Patients and Caregivers

MaryO Can You Help?, Cushing’s Help, message boards , , , ,

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/CushingsHelp/

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.

🏞 Rebuilding the MemberMap

MaryO Can You Help?, Cushing’s Help ,

Slowly but surely, we’re rebuilding the Cushing’s Member Map. The location where we hosted it previously started charging huge amounts of money, so it’s being moved here.

Add your information (or your doctor’s) at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/ or below:

 

 

Record a Video, Receive A Rarity T-Shirt!

MaryO Can You Help?, Cushing’s Help, Interviews, Meetings and Conferences, message boards ,

@happygirl – this looks perfect for you with all your videos!  If you or anyone else from the boards does this, please let me know :)

Help Rare Patient Voice spread the word to other patients and caregivers about RPV by submitting a short video on your experience with us. Check out the growing group of patients and caregivers who have recorded stories: https://rarepatientvoice.com#sharevoice. As a thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card.

Follow these steps to record and submit your own video!

 

Step 1: Scan with code below with the camera app from your Apple/Android mobile device or click the link below!

https://admin.storyvine.com/app_users/sign_up/Sharing_My_Voice

 

Step 2: Download the Storyvine app from the App Store or Google Play

Step 3: Film and upload your video!

To thank you for recording a video, we will send you a Rarity zebra plushie AND enter you in a raffle to win a $100 Amazon gift card. Congratulations to Natalie of California, our January 3 raffle winner! Our next raffle will be held in early February.

Light Up for Rare

MaryO Can You Help?, Cushing’s Help ,

The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases.

NORD is the U.S. sponsor for  Rare Disease Day  on Feb. 28. The annual awareness day spotlights approximately 7,000 rare diseases that affect more than 300 million people worldwide. More than 25 million Americans and their families are believed to be affected by rare diseases.

Participants are encouraged to light or decorate their homes in blue, green, pink, and purple at 7 p.m. local time on Feb. 28. (Blue should be used if only one color is possible.) NORD suggests using NovaBright to light up a building, monument, home, or neighborhood in these rare disease colors.

To join the Light Up for Rare campaign, sign up here. Participants should complete the applications required by the landmarks they pledge to light up, which could include historic buildings and homes, schools and universities, businesses, stadiums, bridges, and monuments. A downloadable template request is available to ask cities and buildings to participate in the initiative.

Once requests are approved, participants should inform NORD so the organization can track the buildings that will be illuminated for Rare Disease Day.

Light Up for Rare is part of the Global Chain of Lights campaign, which aims to unite the rare disease community across the globe and symbolically break the isolation caused by the COVID-19 pandemic.

The European Organization for Rare Diseases (EURORDIS), NORD’s counterpart in Europe, is coordinating the Feb. 28 awareness day there along with several patient advocacy groups. On leap years, Rare Disease Day falls on Feb. 29, the rarest day of the year.

Download the Light Up for Rare toolkit here. Information on how to illuminate a building can be found here. 

The general public, as well as caregivers, healthcare professionals, researchers, clinicians, policymakers, and industry representatives are encouraged to participate in Rare Disease Day advocacy and events. Other toolkits and resources for Rare Disease Day are available here.

After buildings and landmarks are lit up in Rare Disease Day colors, participants are encouraged to share photos and videos on social media. Please use the #RareDiseaseDay and #ShowYourStripes hashtags so the efforts can be spotlighted.

More information at https://rarediseases.org/rare-disease-day/rare-disease-day-light-up-for-rare/

❓Can You Help?

MaryO Can You Help?, Cushing’s Help, message boards , , , , ,

I’m on my second round of GH (I had to stop the first time due to cancer). I’ve been on Omnitrope since 2006 and the threads inside my pen must have worn down – I’m having a lot of trouble injecting it now.

I insert the needle and have to balance on the edge of the countertop in the bathroom and sort of lean in. Has anyone else had to replace the pen? I told my insurance company who sends the actual drug and they said “not us”. I don’t know if my endo has to prescribe another “starter kit” or what.

I did find a website that will sell me a new one for $200 but I’d rather not buy one that way. I found nothing on the Novartis website about this, either :(

Anyone?

Please respond here or on the message boards.

Thanks!

👍 Research Opportunity! All of Us

MaryO Can You Help?, Clinical Trials, Cushing’s Help , , , ,
I just signed up for this because it may be helpful for researchers at the NIH and elsewhere to learn more about Cushing’s, cancer, whatever else they can learn from my history.
Over 35 years ago, I agreed to be a part of a study at NIH so they could learn more about Cushing’s.  I consider this to be a larger, easier part of what I did back then.

From my bio: https://cushingsbios.com/2018/10/28/maryo-pituitary-bio/

As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.

There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!

The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrollable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!

November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!

I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectable cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.

I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.

Health discoveries come from research. Research starts with you.

Join the largest and most inclusive health research initiative of its kind. You could help researchers find answers to the most pressing health questions.

The All of Us WEAR Study has begun!
As a part of this optional study, you could receive a new Fitbit® to wear. All of Us will be able to get the data the Fitbit collects to help researchers understand how behavior impacts health.

Want to help others, too?  Sign up at https://go.joinallofus.org/

❓Can You Help?

MaryO Can You Help?, Cushing’s Help, message boards , , , ,

I think I have Cushing’s I have about 10 symptoms…my cortisol levels came out high with a 24 hour urine hormone panel but my endocrinologist did not even mention it. At the time when I had the test done, (March 2020)I had no idea what cortisol was. I just figured and trusted my endocrinologist would prescribe me with whatever hormones and or treatment I needed and would have me take whatever tests he order. Anyhow, in a range from 1-10 for bedtime cortisol, my result was 27! Cortisol metabolites, range from 1160-2183, my result was 5370!!!

The only reason I started to do more research on cortisol is because just a few weeks ago I started experiencing severe chest pain from the moment I wake up and any little thing stresses me out and gives me anxiety and I feel like I’m gonna have a heart attack any moment!  So I looked back at my paperwork and noticed these really elevated cortisol levels. But my endocrinologist never mention them… Why? This is how I found this disease,  I have so many symptoms of Cushing’s disease, And it is not a result of exogenous stuff causing cortisol levels to rise. I don’t take any medication whatsoever and was not taking any medication at that time or for the past year. All I have taken for the past year is what he prescribed, thyroid medication and progesterone. Someone please tell me if these levels are of concern from your perspective.

Please respond here or on the message boards.

Thanks!

$$$ Attention Cushing’s Patients ~ Patient Advisory Board $$$

MaryO Can You Help?, Cushing’s Help , , , , , , , , , ,

Cushing’s Syndrome Patient Advisory Board: Patient Qualifier

Virtual Patient Panel for Cushing’s Syndrome Patients
Patients that are accepted will be compensated for their participation.

Q1: Are you a U.S. Citizen and at least 18-years or older?

Q2: Have you been diagnosed with Cushing’s Disease (CD) or endogenous Cushing’s syndrome (CS)?

Q3: Did your doctor find a tumor on your Pituitary Gland?

Q4: You must currently be taking a prescription medication to treat your Cushing’s. The medication must include ONE of the following:

  • ketoconazole
  • ISTURISA® (osilodrostat)
  • KORLYM® (mifepristone)
  • SIGNIFOR® (pasireotide), OR SIGNIFOR® -LAR (pasireotide).

Q5: You must have been on your current medication for at least 1-month (ISTURISA-only), and all other Cushing’s medications for ≥3-months.

If you answered all the questions YES and are taking a prescription medication to treat your Cushing’s, please contact:
KIRSTEN YORK, Vice President of Discovery, at ENTRADA.

❓Can You Help?

MaryO Can You Help?, Cushing’s Help, message boards , , ,

Hi I recently became aware of my possible buffalo hump after xrays of my neck were normal except for a fat pad at the base of my neck.

After reading of some of the symptoms of Cushings it was a light bulb moment with so many symptoms being similar to what I’m going through.

I have extra fat in my sternal notch as well, looking at these pictures do I have a moon face, etc.

I’m waiting for the results of my 24 hour urine test.

Thought I would ask to see what you all thought. Thanks for your help.

This potential Cushie has posted several photos here.

Please respond here, on the message boards, or in the original post.

Thanks!