Ask your Member of Congress to join the Rare Disease Congressional Caucus

Help us strengthen the rare disease community's voice on Capitol Hill!  Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert.

It's easy - the Action Center has a draft letter that will automatically be sent to your Member of Congress - just put in your name and address & click send.  We also encourage you to personalize the letter to share information about your specific disease.  If your Congress Member is already on the Caucus, the letter will automatically populate as a thank you letter instead - these are just as important to send!

It can take up to 10 letters from constituents for a Member to respond so please share this Action Alert with your friends, family & colleagues.  Join our Facebook event & invite your friends:   http://on.fb.me/17Mlpjg 

The Rare Disease Congressional Caucus will help bring public and Congressional awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry, and create opportunities to address roadblocks in access to and development of crucial treatments.  The Caucus will give a permanent voice to the rare disease community on Capitol Hill.  Working together, we can find solutions that turn hope into treatments.

Day Four, Cushing's Awareness Challenge

So, these are only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.

Here’ are some of the many areas affected.

• Progressive obesity and skin changes
• Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
• Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
• Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
• Thinning, fragile skin that bruises easily
• Slow healing of cuts, insect bites and infections
• Acne

Women with Cushing’s syndrome may experience:

• Thicker or more visible body and facial hair (hirsutism)
• Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

• Decreased libido
• Decreased fertility
• Erectile dysfunction

Other signs and symptoms include:

• Fatigue
• Muscle weakness
• Depression, anxiety and irritability
• Loss of emotional control
• Cognitive difficulties
• New or worsened high blood pressure
• Glucose intolerance that may lead to diabetes
• Headache
• Bone loss, leading to fractures over time
• Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
• Recurrent opportunistic or bacterial infections

Think you have Cushing’s?  Get to a doctor and don’t give up!

         MaryO

 

Cushing's Awareness Challenge Countdown...

Only 3 days (counting today) until the Cushing's Awareness Challenge begins.  At night, when I'm supposed to be sleeping, ideas for posts keep swarming through my head.  Sometimes, they form into fully-written posts.  Then, when I wake up, the posts are gone.

I plan to follow the suggestions to some extent and have a few ideas of my own.  Over the years, I've posted lots on several blogs but I don't know if I can get 30 days of Cushing's stuff together!

At the moment, there are 26 participants in this challenge and growing.  Please follow their blogs.  The list is here and is constantly updated as new URLs come in.

If you want to join us, its not too late.  Directions and suggestions for posts can be found here: http://cushie-blogger.blogspot.com/2012/03/cushing-awareness-challenge.html

If you have ideas for what you'd like to read about (Cushing's related, of course), please feel free to put it in the comments area.

 

 

 

Cushing's Awareness Challenge

Do you blog? Want to get started?

Since April 8 is Cushing's Awareness Day, several people got their heads together to create this blogging challenge. 

All you have to do is blog about something Cushing's related for the 30 days of April. Robin designed 3 versions of our "official logo" to put on your blogs.

Please note that these are thumbnails - the actual image is larger than shown here. Click on the images to view actual size.

If your blog wants you to upload an image from your desktop, right-click on the image above and choose "save-as". Remember where you saved it to!

In all cases, the URL for the site is http://www.cushings-help.com

[[posterous-content:pid___0]]Small. If your blog asks you to enter the URL, use this: 

Medium. If your blog asks you to enter the URL, use this: 

Large. If your blog asks you to enter the URL, use this: 

 

 

Please let me know the URL to your blog 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!

1. In what ways have Cushing's made you a better person? 
2. What have you learned about the medical community since you have become sick? 
3. If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients? 
4. 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. 
5. I have Cushing's Disease....(personal synopsis) 
6. How I found out I have Cushing's 
7. What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.) 
8. My challenges with Cushing's 
9. Overcoming challenges with Cushing's (could include any challenges) 
10. If I could speak to an endocrinologist organization, I would tell them.... 
11. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing's? 
12. Treatments I've gone through to try to be cured/treatments I may have to go through to be cured. 
13. What will happen if I'm not cured? 
14. I write about my health because… 
15. 10 Things I Couldn’t Live Without. 
16. My Dream Day. 
17. What I learned the hard way 
18. 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) 
19. Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. 
20. The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it? 
21. 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! 
22. 5 Challenges & 5 Small Victories. 
23. The First Time I… 
24. 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. 
25. How much money have you spent on cushing's, or, How did Cushing's impact your life financially?
26. Why do you think Cushing's may not be as rare as doctors believe? 
27. What is your theory about what causes Cushing's? 
28. How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been? 
29. 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? 
30. How do you cope? 
31. What do you do to improve your quality of life as you fight Cushing's?
32. Your thoughts...?

 

Cushing's Awareness Challenge

Do you blog? Want to get started?

Since April 8 is Cushing's Awareness Day, several people got their heads together to create this blogging challenge. 

All you have to do is blog about something Cushing's related for the 30 days of April. Robin designed 3 versions of our "official logo" to put on your blogs.

Please note that these are thumbnails - the actual image is larger than shown here. Click on the images to view actual size.

If your blog wants you to upload an image from your desktop, right-click on the image above and choose "save-as". Remember where you saved it to!

In all cases, the URL for the site is http://www.cushings-help.com

See the full gallery on Posterous

Small. If your blog asks you to enter the URL, use this:

Medium. If your blog asks you to enter the URL, use this:

Large. If your blog asks you to enter the URL, use this:

 

Please let me know the URL to your blog 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!

1. In what ways have Cushing's made you a better person? 
2. What have you learned about the medical community since you have become sick? 
3. If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients? 
4. 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. 
5. I have Cushing's Disease....(personal synopsis) 
6. How I found out I have Cushing's 
7. What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.) 
8. My challenges with Cushing's 
9. Overcoming challenges with Cushing's (could include any challenges) 
10. If I could speak to an endocrinologist organization, I would tell them.... 
11. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing's? 
12. Treatments I've gone through to try to be cured/treatments I may have to go through to be cured. 
13. What will happen if I'm not cured? 
14. I write about my health because… 
15. 10 Things I Couldn’t Live Without. 
16. My Dream Day. 
17. What I learned the hard way 
18. 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) 
19. Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. 
20. The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it? 
21. 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! 
22. 5 Challenges & 5 Small Victories. 
23. The First Time I… 
24. 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. 
25. How much money have you spent on cushing's, or, How did Cushing's impact your life financially?
26. Why do you think Cushing's may not be as rare as doctors believe? 
27. What is your theory about what causes Cushing's? 
28. How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been? 
29. 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? 
30. How do you cope? 
31. What do you do to improve your quality of life as you fight Cushing's?
32. Your thoughts...?

 

Cushing's Will Be on Mainstream TV - tomorrow!

ABC’s World News Tonight is doing a story on Cushing’s syndrome. 

 

We are very excited in that it has a chance to raise awareness of Cushing’s among the millions of viewers and potentially reach some people who haven’t yet been diagnosed. 

 

A physician who is going to be interviewed for the segment, which is planned to air tomorrow, March 6, 2012!

 

Be sure to tune in... and record the segment?

 

Cushing's Will Be on Mainstream TV - tomorrow!

ABC’s World News Tonight is doing a story on Cushing’s syndrome. 

 

We are very excited in that it has a chance to raise awareness of Cushing’s among the millions of viewers and potentially reach some people who haven’t yet been diagnosed. 

 

A physician who is going to be interviewed for the segment, which is planned to air tomorrow!

 

Be sure to tune in... and record the segment?

Have You Had A Cushing's Recurrence? Please Help with This Video Project!

Trisha writes: 

Working on a new video with Beth G. as my partner. With Corlum now thrown in the mix, we want to compare the best treatment options for recurring cushings. We want to hear from you about weather you are glad you had a BLA? if you could do it over again, would you? If you had meds available, did you try them first? What challanges do you have on a regular basis because of BLA? Why would you not want a BLA? What do you hope to get out of having a BLA?

We are not looking for the medical side, just the human side. If you would like to participate, message both Beth and myself on the same message. If you have a webcam, we would like to include video into the video and set up an interview.

Remember, its all about Awareness!

 

Beth says:

I'm working on a questionnaire so that everybody can answer the same set of questions. Trisha or I will email it so you to fill out, so can anybody interested please send us your email address? We're interested in you if: 

a) You've had a BLA

b) You're considering a BLA

c) You're a potential candidate but would never consider a BLA

PLEASE REMEMBER: Any information you provide related to a BLA will become public, so if you're not willing to have your thoughts and answers shared with the public (meaning outside of this group in a video that will hopefully go viral on youtube!) then please don't sign up to help with this project!

Feel free to ask us questions! Thanks!!

 

If you want to participate, please email Beth at icybluesnow@gmail.com

Thanks!