Rare Diseases & Loneliness

My name is Kristie and I have Erythromelalgia. I was diagnosed in 2016 and have experienced many challenges. Thanks to my EM support group, I was able to overcome the beginning stages; accepting my new way of living with EM. I am also a doctoral student at the University of Southern California, and my mission is to create an organization or a new innovative service to better support the rare disease community. A large part of my mission is to educate people about the negative effects of loneliness, and helping improve the quality of lives for individuals with rare diseases. Your feedback is the key to the solution. Your feedback is 100% anonymous. Please feel free to contact me with any additional questions at Kristiec@usc.edu

Question Title

* 1. Have you ever felt lonely or depressed?

Question Title

* 2. What would make you feel less lonely and depressed?

Question Title

* 3. What coping skills do you have to manage your pain?

Question Title

* 4. Have you ever utilized mental health services to help cope with your rare disease?

Question Title

* 5. Are you aware that seeking mental health services can improve your physical health?

Question Title

* 6. Have you ever called a hotline just to talk to someone?

Question Title

* 7. What does a better quality life look like to you?

Question Title

* 8. What has been your best support system?

Question Title

* 9. Are you part of a support group?

Question Title

* 10. What type of organization or services would better support you?

T