📅 Rare Disease Day 2019

rare disease day

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

Please let me know if there are any issues after this upgrade.  Find the boards at http://cushings.invisionzone.com

 

Good news! Version 4.4.6 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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