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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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