When there is a rare or underserved disease in your life it can be extremely difficult to know where you are on the scale of doing well or doing poorly. I know that sounds strange but let’s explore some hypothetical “what ifs” for a moment.
Let’s say in this hypothetical situation that your sister has gastroparesis. She’s married, works a full time job, has two kids, takes a prokinetic motility drug to help her digestion, and can’t eat fatty or fibrous foods. She’s been depressed and withdrawn about her condition because she can’t participate in the community activity of sharing a meal with friends and family. She has had to miss a lot of work for feeling poorly and is worried about job security. You propose that you and she attend a one-day patient conference on gastroparesis to get some perspective.
What happens at the conference:
She learns that there is a different drug that has had better effects than the one she is on. She meets dozens of people with the disease and makes some new friends. She also finds out that there is a fantastic doctor in her area that someone else at the conference is using who has had great success treating gastroparesis.
In the afterglow of the conference she makes a few changes:
- She joins the patient support group for gastroparesis sufferers and their families and stays actively engaged with patient advocacy
- She makes an appointment with a new doctor who gets her started on a new medication and discusses some treatments that she might benefit from
- She learns about the legality of being an employee with a chronic disease, speaks with her employer, and learns how to be more productive within the limitations of her condition
- She also learns that depression is not unusual in the case of chronic diseases and talks to her doctor about getting treatment
Attending patient support conferences affords you a rare and wonderful connection with other people who really understand your condition. It opens lines of communication and possibility. It can give hope or perspective by highlighting the experiences and challenges of others who share your challenge. Most importantly, patient conferences empower patients and their caregivers with the knowledge and support to make positive changes in their lives.
Patient conferences can be a shared experience where lifelong bonds are made. Better than an online community, you get to see and feel what others experience and make what can be a lonely, isolating condition more manageable. So go to your patient support association and ask about live events or patient conferences that you can attend. To read more about resources that may be available to you, please click here.
Cal-EZ is proud to support the Hypoparathyroidism Association, and now you can too!
When hypoparathyroidism patients, caregivers, or family members make a purchase, 10% of the total purchase price will go towards an unrestricted grant to the Hypoparathyroidism Association, Inc.