Cushing’s disease, like all other rare diseases, benefits greatly from increased awareness and advocacy. Because there are fewer patients and affected individuals, their voices need to be louder in order to be heard. Fortunately, the Cushing’s Support & Research Foundation (CSRF) has listed numerous ways to help and get involved.
About Cushing’s Disease
Before we can celebrate and advocate, we have to understand what Cushing’s disease is. It falls under the larger umbrella term, Cushing syndrome, but should not be confused with it. Characterized by an overproduction of the adrenocorticotropic hormone (ACTH), affected individuals see tumors form on the pituitary gland or excess growth of the gland itself. With too much ACTH, the body goes on to produce too much cortisol. This causes the symptoms of the disease, which are:
- Weight gain
- Stretch marks
- Easy bruising
- Changes in mood
- This may mean anxiety, depression, issues with memory and concentration, and worsening temperament
- A weakened immune system
- This makes affected individuals susceptible to infection
- Osteoporosis
- Muscle weakness
- Fatigue
- High blood pressure
- Reproductive symptoms
- Males may experience erectile dysfunction while females see changes in menstruation
Cushing’s Awareness Day
Celebrated on April 8th and organized by the CSRF, Cushing’s Awareness Day is meant to raise awareness and garner support for the more than 6 million people who live with this rare disease. This day was picked to coincide with Dr. Harvey Cushing’s birthday, the father of neurosurgery and the first one to describe Cushing’s in medical literature.
Here are some of the ways you can get involved!
- Send a contribution to the CSRF – you can email it to [email protected] – by April 7th to be considered for a giveaway held on April 8th
- You can send in a patient story (especially if you were recently diagnosed), photos for the organization’s Instagram page, an elevator speech (50 seconds or less) about your Cushing’s story, or a photo wearing the non-profit’s merchandise
- Post your own social media content using the hashtag #cushingsawarenessday
- Submit the information of the physician who made your diagnosis and subsequent treatment so it can be added to the CSRF’s doctor list
- Non-specialists are highly encouraged
- If an endocrinologist improperly diagnosed or was unable to diagnose, their information is wanted too, so that the non-profit can send helpful information
- Don’t worry, your information is kept anonymous unless you state otherwise
- The week following Cushing’s Awareness Day, a Zoom roundtable discussion will take place. The focus will be Cushing’s community needs
- You can register here.
These are just a few ways to get involved! You can read more about this special day here, or visit the CSRF’s page.
