Cushing’s syndrome is a hormonal disorder. It occurs from extended exposure of the body to high levels of cortisol. Most commonly, this is caused by oral corticosteroid medicine. Cushing’s syndrome is also known as hypercortisolism.
|Rapid weight gain||Rapid weight gain|
|Excess sweating||Excess sweating|
|Telangiectasia||Telangiectasia is the dilation of capillaries.|
|Severe fatigue||Severe fatigue|
|Striae||Striae are irregular areas of skin that look like bands, stripes, or lines.|
|Buffalo hump||Buffalo hump|
|High blood pressure||High blood pressure that is often hard to control even with medication|
|High blood sugars and/or insulin resistance||High blood sugars and/or insulin resistance|
|Altered diurnal rhythm||Altered diurnal rhythm|
|Secondary hypothyroidism||Secondary hypothyroidism|
|Low hormones||Low hormones such as FH, LSH, testosterone, growth hormone|
|Low vitamin D||Low vitamin D|
|Low ferritin||Low ferritin|
|Easy bruising||Easy bruising|
|Muscle, bone, and joint pain||Unexplained muscle, bone, and joint pain|
|Muscle weakness||Muscle weakness|
|Hirsutism||Hirsutism is increased facial hair/body hair|
|Loss of menstrual cycle and/or ovulation||Loss of menstrual cycle and/or ovulation|
|Loss of libido||Loss of libido|
|Loss of hair on head||Loss of hair on head|
|Difficulty when drawing blood||Difficulty when drawing blood|
|C||It is crucial for individuals with Cushing’s syndrome to not push themselves too hard physically, eat healthily, and monitor their mental health. Cognitive issues resulting from Cushing’s syndrome may improve through mental exercises such as Sudoku. Pain can be alleviated with low-impact exercise, hot baths, and massages.|
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Hey, ladies, I just joined and updated some of the info that was there. I'm not sure if they don't like what I said about the diagnostic tests or if they are waiting on approval....hmmmmmm...
Hi Gracie and everyone else. Thanks for joining me so I wasn't a loner in this group. :) I thought it would be nice to have a group here when I saw it and thought that we can help others learn about this illness. If anyone wants to add anything, I think that would be really cool.. to give more information about this disease. Welcome everyone!
I see there are three of us here now. Thanks for letting us know about this site Suitechic! It's another way for us to get the word out, and share our knowledge! Hopefully we will meet even more people through this site, and be able to help others as well. Hugs, Gracie
Hi Everyone, My name is David Isserman and I am one of the co-creators of RareShare. I just wanted to quickly welcome you all to the Site. If you ever have any questions about RareShare or suggestions on improving the Site, please feel free to contact me at firstname.lastname@example.org. David
|Cushings Help Organization||
Cushings Help Organization provides information, support, RSS feeds, news, and education for people with Cushing's or other endocrine problems, their friends and families. Cushing's syndrome is a hormonal disorder.
|Survive the Journey||
A blog about the journey of a Cushing's Disease survivor. There you will find information on testing, diagnosis, and treatment. The latest research is outlined, also.
The author talks about the personal side of her journey at times, and she relates the medical aspects in language anyone can understand.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
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Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.