Easily organize your medical appointments, surgeries and important information with the "Working Together...A Patient and Physician Helper". An important investment for all with Aniridia Syndrome.
One of the things that has been challenging in living with Aniridia Syndrome has been the numerous physician appointments, the financial costs associated with them, traveling to them, assistive devices, and most importantly keeping track of all your important medical data in an organized, easy to find way. Also, there is frustration with those “annual update paperwork requests” by doctor offices asking you to write out all your medications, list all your surgeries and then having to remember the dates. Encouraged by physicians, Aniridia Foundation International has addressed these issues to help the patient, parents and the doctors by creating the “Working Together… A Patient and Physician Helper”. This personalized (optional) organizational binder can easily be taken to each doctor appointment to record important information and share information with your doctor’s office. We now know that Aniridia Syndrome affects more than just the eyes so in addition, there are areas for medical information and reports. Medical measurements are especially helpful for our Aniridia Syndrome research on insulin resistant diabetes and metabolism. Lastly, this binder is especially helpful if you are seeing multiple doctors so they are all on the same page. Sections include: 1) Helpful information, a glossary, fillable page templates to add pages when needed. 2) At a Glance logs to monitor overall progress or share with your doctors about glaucoma pressures, visual acuity, surgeries, medical issues and more. There is an editable medication list with dosages saving you time by printing them out before your appointment. 3) Individual appointment sheets to record measurements, questions you do not want to forget to ask, follow up appointment reminders and a doctor’s note area to share with other doctors. 4) A section to keep genetic results, latest lab work, other important reports or documents you may need to share. 5) Physician and Pharmacy contact list for your doctor to easily send in a prescription or correspond with one of your physicians. Having this information at your fingertips helps the techs / nurses get your “work up” information entered faster so that you have more quality time with the doctor. Best yet, The Patient and Physician Helper comes with the Aniridia Foundation International USB flash drive with much information. Some items are: •Templates to print out when more pages are needed. All templates are PDF fillable forms which make editing easy. For example your medication list or doctor / pharmacy information can be edited and then printed out for each appointment or “annual update paperwork request”. No more having to rewrite the lists by hand or think about dates of surgeries.
•A glossary of words and definitions to help educate about Aniridia Syndrome and also help answer questions accurately in the newly updated AFI Medical Registry electronic medical / research questionnaire.
• A medical release template – fill / print out and send to your ophthalmic and medical physicians requesting medical records to be added to your Medical Registry file. Based on these records, you may be contacted for new clinical trials and research (some are compensated studies). The more information we have from our community the faster we can advance knowledge about this genetic disorder.
This organizational tool is definitely a good investment both to help you with the data collection for the AFI Medical Registry program and so you can make your life journey with Aniridia Syndrome easily documented for you and your doctors.