If you have a rare disease it’s likely you’ll encounter medical professionals who have never heard of your condition. Therefore, it’s a good idea to always be an active member of your health care team. Guest blogger Lori Grover shares seven important ways you can self-advocate.
VOICES of Amyloidosis
VOICES of Amyloidosis is a five-part campaign intended to give voice to those impacted by the disease. Each person in this video, which includes patients, caregivers, and expert doctors, have a story to tell in their own unedited words. You will feel their emotions and share their hope for the future.
Building a Caregiver Team
There are times when those afflicted with amyloidosis need assistance — a caregiver. In some instances, such as a stem cell transplant (SCT), the treatment is so extensive that securing a caregiver is required before treatment commences. It is for these more intensive situations that we thought we’d share some thoughts about how to build a caregiver team.