It’s not often that I get to introduce a very special member of the Ben’s Friends team with a unique and interesting project . @Arjuna_BFintern is one of our interns, a university student volunteer who is hoping to have a career in one of the medical professions. He has been doing an exceptional job on several of our communities greeting new members.
Imagine everyone’s excitement when we heard that Arjuna was planning a Ben’s Friends Rare Diseases conference at his university in Toronto! As part of the conference program, Arjuna would like to present some insights from our members.
Could you help Arjuna by answering a few questions? Your answers will provide interesting discussion material at the Rare Diseases Conference later this month.
Your participation will help aspiring medical professionals understand the unique challenges and problems facing people like us, whose lives have been touched by a rare disease or condition.
Hello everyone! I’m Arjuna, a Ben’s Friends intern, and I want to raise awareness and funds for various rare diseases. One of our upcoming events is the inaugural Rare Diseases Conference on March 10th. As part of the event, we will be providing a conference package to attendees.
We’re hoping to include some interviews with patients and volunteers who are part of the Ben’s Friends online support communities. Please let me know if you’re interested in sharing some of your unique perspective and experiences! Interviews will be only 2-3 questions and entirely at your discretion.
QUESTIONS:
What is your rare disease, and how has it affected the way you live your life?
Could you tell me a bit about your experience with the healthcare system, such as how your disease was diagnosed or treated?
What do you think of the current state of knowledge and research on your particular rare disease? Where would you want it to go in the future?
How has being involved with the Ben’s Friends community affected your experience as someone with a rare disease?
We want to raise public awareness about Eagle Syndrome, so that eventually more funding will go into its research! Feel free to reply to this post directly, or shoot me a private message with your response!!
Condition: Possible ES, (diagnosed and rescinded in 4 months) calcified styloid. I’m guessing because styloid is considered normal. I am requesting second measurement.
*Medical Expert Experience: Not great. So many are dismissive of patient symptoms. Several misdiagnosed and prescribe harmful meds. Long journey and not close to any resolution. It seems as if docs want to treat and charge insurance, but not heal.
*Knowledge: Generally, doctors know little and are comfortable with the lack of knowledge.
*Ben’s Friends: Enjoy direct support from people having same symptoms. Friends support, but simply cannot understand how symptoms affect me every day. Grateful someone let me know about this site.
