✏️ It’s Time to Sign Up for the Cushing’s Awareness Challenge 2019

I plan to do the Cushing’s Awareness Challenge again. Last year’s info is here:  https://cushieblogger.com/2018/03/11/time-to-sign-up-for-the-cushings-awareness-challenge-2018/

The original page is getting very slow loading, so I’ve moved my own posts to this newer blog.

As always, anyone who wants to join me can share their blog URL with me and I’ll add it to the links on the right side, so whenever a new post comes up, it will show up automatically.

If the blogs are on WordPress, I try to reblog them all to get even more exposure on the blog, on Twitter and on Facebook at Cushings Help Organization, Inc.  If you have photos, and you give me permission, I’ll add them to the Pinterest page for Cushing’s Help.


The Cushing’s Awareness Challenge is almost upon us again!
Do you blog? Want to get started?
Since April 8 is Cushing’s Awareness Day, several people got their heads together to create the Eighth Annual Cushing’s Awareness Blogging Challenge.
All you have to do is blog about something Cushing’s related for the 30 days of April.
There will also be a logo for your blog to show you’ve participated.
Please let me know the URL to your blog in the comments area of this post, on the Facebook page, in one of the Cushing’s Help Facebook Groups, on the message boards or an email  and I will list it on CushieBloggers (  http://cushie-blogger.blogspot.com/ )
The more people who participate, the more the word will get out about Cushing’s.
Suggested topics – or add your own!
  • In what ways have Cushing’s made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing’s patients?
  • What would you tell the friends and family of another Cushing’s patient in order to garner more emotional support for your friend? challenge with Cushing’s? How have you overcome challenges? Stuff like that.
  • I have Cushing’s Disease….(personal synopsis)
  • How I found out I have Cushing’s
  • What is Cushing’s Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing’s
  • Overcoming challenges with Cushing’s (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them….
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing’s?
  • Treatments I’ve gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I’m not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing’s, or, How did Cushing’s impact your life financially?
  • Why do you think Cushing’s may not be as rare as doctors believe?
  • What is your theory about what causes Cushing’s?
  • How has Cushing’s altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing’s stolen from you? What do you miss the most? What can you do in your Cushing’s life to still achieve any of those goals?
  • What new goals did Cushing’s bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing’s?
  • How Cushing’s affects children and their families
  • Your thoughts…?
maryo colorful zebra

❓Do You Use Mario Badescu Skin Care Products?

Thirty-one former customers have filed suit in New Jersey State Court against Mario Badescu, Inc., a skincare company based out of Edison, New Jersey, and Mario Badescu Skin Care, Inc., a skincare salon in New York.

The plaintiffs allege that they were injured by potent and undisclosed steroids in two of Mario Badescu’s face creams, Control Cream, and Healing Cream, which were marketed as products that contained only “botanical” active ingredients that were safe for daily use. The complaint alleges that contrary to what Mario Badescu told the public, Control Cream and Healing Cream contained two steroids: hydrocortisone and triamcinolone acetonide. The complaint also alleges that Mario Badescu’s products contained higher than prescription-strength doses of triamcinolone acetonide. Both steroids pose serious health risks to both the skin and the body’s adrenal system.

The plaintiffs were unaware of the steroids in Mario Badescu’s products and used the products on their faces, usually daily, for as long as fourteen years. Many of the plaintiffs allege that they unwittingly became addicted to the steroids such that even a day without use of the Products caused severe and painful withdrawal reactions. Moreover, many of the plaintiffs allege that they suffered from steroid-related ailments while using Control Cream or Healing Cream, including cataracts, glaucoma, mood disorders, heart issues, elevated cortisol levels, adrenal system suppression and Cushing’s Syndrome. Plaintiffs allege that because they did not know they were using steroids at the time, they were unable to inform their physicians about the true source of their injuries and were repeatedly misdiagnosed by their medical providers.

“Mario Badescu secretly added an addictive prescription steroid to its cosmetic face creams, then told its customers that the creams were safe for daily use,” Plaintiffs’ counsel, Gary E. Mason said. “Our clients suffered devastating injuries as a result of this deception,” Mason added.

The plaintiffs are represented by John C. Whitfield, Gary E. Mason, Esfand Nafisi, and Caroline Ramsey Taylor of Whitfield Bryson & Mason LLP, and Michael Galpern, Andrew Bell and Janet Walsh of Locks Law Firm, LLC. For more information about the lawsuit, contact the firm by phone at (202)640-1167.

The name of the case is Restaino et al. v. Mario Badescu, Inc. et al., No. MID-L-5830-14 (N.J. Super. Ct. Law Div., filed Sept. 25, 2014).

See us on WTVH/WEHT Evansville! “Tristate Law Firm Takes On Major Cosmetics Company

📅 Rare Disease Day 2019

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What am I doing for Rare Disease Day?

For me, it’s more that one day out of the year. Each and every day since 1987,  I tell anyone who will listen about Cushing’s.  I pass out a LOT Cushing’s business cards and brochures.

My husband also passes out cards and brochures.

Adding to websites, blogs and more which I have maintained continuously since 2000 – at mostly my own expense.

Posting on the Cushing’s Help message boards about Rare Disease Day.  I post there most every day.

Tweeting/retweeting info about Cushing’s and Rare Disease Day today.

Adding info to one of my blogs about Cushing’s and Rare Disease Day.

Adding new and Golden Oldies bios to another blog, again most every day.

Thinking about getting the next Cushing’s Awareness Blogging Challenge set up for April…and will anyone else participate?

And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)

~~~

Why am I so passionate about Rare Disease Day?

I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat. My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.

I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.

And then, there’s the adrenal insufficiency

And growth hormone deficiency

If you’re interested, you can read my bio here: https://cushingsbios.com/2018/10/28/maryo-pituitary-bio/

What are YOU doing for Rare Disease Day?

 

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‼️ Message Board Upgrade Today

Good news! Version 4.4.0 of Invision Community is now available.

Major New Features / Enhancements

  • Post Before Registering
  • Animated GIFs
  • AdminCP Notification Center
  • New Email Features:
    • Email Statistics
    • Email Advertisements
    • Unfollow Without Logging In
  • SEO Improvements:
    • Improved pagination with page number now in path (rather than query string) and unique page titles for paginated pages.
    • Improved use of canonical tags.
    • Improved handling of empty containers and profiles to reduce soft 404s.
    • Improved JSON-LD markup, adding @id tags and fixing URLs for comments.
    • Removed page output hidden by JavaScript.
  • Performance Improvements:
    • Added Lazy Loading for images, which will speed up page rendering.
    • Added HTTP/2 support with prefetch/preload.
    • Added support for Brotli compression.
    • Improved default profile photos to use inline SVGs rather than generated images, which will speed up page rendering.
    • Improved browser caching of pages served by the guest page cache, which will reduce the number of requests reaching the server.
    • Improved handing of session data for guests to reduce database reads for guests.
    • Optimized images to reduce file size for faster page rendering.
    • Other minor performance improvements to reduce database queries and fix unnecessary code execution.
  • Commerce Store Filters allow customers to filter products by price, review, stock, or custom admin-defined filters.

Core

  • Added setting to display user group formatting in more areas (see 6 New Micro Features).
  • Added less intrusive browser notification prompt in Notifications menu (see 6 New Micro Features).
  • Added ability to show sidebar blocks to only certain types of devices (see 6 New Micro Features).
  • Added ability for club owners to reorder the navigation tabs (see 6 New Micro Features).
  • Added ability for announcements to be linked to an URL or be a title only (see 6 New Micro Features), improved consistency in how announcements are shown in different areas.
  • Improved UI for entering time intervals in AdminCP settings (see 6 New Micro Features).
  • Added a new Icons & Logos section in the AdminCP which allows providing logos for use when sharing links from the community, adding the community as a home screen app on a mobile device (along with additional settings for a PWA manifest to control certain aspects the community’s behaviour when used in this way), and in Safari’s favourites menus and pinned tabs on macOS.
  • Added a new UI for attachments, showing a box with some information about the file, rather than a plain line (see Turbo charging loading speeds).

Removed Features

  • Removed EmojiOne-style emojis due to licensing issues.
  • Removed Gravatar support due to privacy concerns and performance issues.
  • Removed password hashes when downloading a member list from the AdminCP. This is for security, to reduce the ease of obtaining sensitive data if the AdminCP is ever compromised.
  • Removed the name of the content (e.g. topic) from the “Next Unread” link which could consume significant server resources on large communities.

❓Can You Help?

Guest Question from the message boards: Low TSH, Low FT4, buffalo hump and many other symptoms

I have been struggling with progressive symptoms of extreme fatigue, muscle weakness, increased anxiety and depression, rage, acne, weight gain, and sweating just doing small tasks over the last 3 to 4 years. I also have a very hard time controlling my body temperature. I get really cold, turn the heat up, get really hot, turn the heat down, over and over throughout the day. (I’m 36 years old) If I’m sitting I’m freezing. If I’m up moving I’m on fire and sweating. Just such dramatic ends of the spectrum. Anyway, for a long time my GP was only checking my TSH. (Hypothyroidism runs strong in my family). My TSH has always been on the low end of normal. I was feeling so awful, I insisted they were missing something and asked them to check my FT4. That has also always ran at the lower end of normal. They treat me with Levothyroxine to try to increase my FT4, but in doing so, cause my TSH to go even lower. I googled what it meant to have a Low TSH with a low FT4 and it said it could be hypothyroidism caused by a pituitary tumor. I then came across Cushing’s which started showing pictures of the classic “buffalo hump” and my jaw hit the floor.

About a month ago, I caught myself in profile in my mirror and was completely taken aback by my appearance. My husband and I aren’t sure how long my neck has looked this way. Either way I was just wondering what others thoughts were. My GP has ordered some kind of cortisol test thus far that I’ll go for tomorrow. I would also like an MRI of my pituitary and possibly adrenals. I’m just tired of sleeping my life away and have been searching for answers for so long. Please let me know what you think of the hump.

Are there other causes for this appearance? Thanks

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❓What Do *You* Think?

This came up in the comments to https://cushingsbios.com/2018/11/17/jayne-in-the-media/

The question is

I dropped by this site because my friend’s daughter has Cushings and I wanted to learn more. Is there any chance that Cushings might be manageable or improvable in a way similar to what Izabella Wentz proposes for Hashimotos?

What do you think?

💉 Helpful Doctors: Oregon

Krista shared her helpful doctor, Maria Fleseriu, in her bio.

 

How would you rate your Helpful Doctor? 5/5
Your Doctor’s Name Maria Fleseriu
Your Doctor’s Address Street Address: 3303 SW Bond Ave
City: Portland
State / Province: Or
Postal / Zip Code: 97239
Your Doctor’s Phone Number (541) 494-4314
What are your Doctor’s Specialties? Neuro-endocrinology
What are your Doctor’s Hospital Affiliations? OHSU

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