Linda, a moderator on the atypical HUS community and volunteer with the Foundation for Children with Atypical HUS created tools for people living with a rare disease, or their families, to use when managing their symptoms. Linda is sharing this tool online with her aHUS community, during aHUS meetings, and now with the rest of the rare disease community.
The first tool is the Lab Tracker that provides an organized format to record test results, medications, treatments, doctor contact information, and allergies. Many rare diseases require frequent monitoring and multiple medications throughout the day. The Lab Tracker could help encourage personal responsibility and good record keeping for young adults learning how to manage their condition with less parental involvement. Or, serve as useful information for a carer when leaving your young person with someone new who might not know the child’s normal routine. If you need additional Lab Tracker pages for tests, you can find them here.
Take charge of your health! The Patient Self-Advocacy Tool provides an organized format to list concerns, issues, and questions that arise at home between visits to your health professionals. Great for adult patients or those caring for a patient with chronic illness, this trifold is ideal to fill in at home and bring to your next visit to the clinic, hospital, or doctor. Start your next medical conversation as an informed advocate for yourself or a loved one – focus discussion on key medical issues and get the most out of your appointments.
While managing a rare disease is incredibly complicated for parents and patients alike, keeping good notes and staying organized is a strategy that most learn over time. For some, it may take the form of a daily journal, but we think what Linda and the Foundation have done here with the Lab Tracker and Patient Self-Advocacy Tool could also easily be modified to fit the needs of another disease.
We all need to be informed advocates and partners in our healthcare and the care of our loved ones. Don’t expect a doctor to perform magic if you can’t discuss symptoms, medications used, and concerns you need addressed.
If you would like adjust the tools for use with your rare disease group, please contact us: firstname.lastname@example.org Both tools can be re-used and edited with permission.
See the original blog post about these tools: http://atypicalhus.ning.com/page/grab-n-go-tool-kit