Tips for Navigating Your Healthcare

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          5 Things To Help Deal With A Rare Disease

          It’s never going to be easy navigating life with a rare disease as debilitating and idiosyncratic as Stiff Person Syndrome. These tips are what help me be here, be present, and be me.

          How to Take Notes & Ask Questions

          1. Make a list of questions in advance of appointments.

          2. Keep a notepad book.

            • Each visit is a new page.

            • You can refer back to previous notes and add new notes.

            • Mark the date, note with whom you are visiting and which tests the doctor orders.

          3. Ask the Doctor for the best way to communicate with him and write down the contact information.

          4. If the doctor wants to draw pictures and information, ask her to do it in your notebook.

          5. Record the conversation so you can review and further process after the appointment.

          6. Ask – is there anything I haven’t asked that you would ask if you were in my situation?

          7. Ask where you can read more about what we have discussed.

          Face Sheet – Bring This Information to Every Appointment

          Bring two copies of your face sheet to every appointment, one for you and one for the doctor. This form organizes and summarizes your information so doctors can get a quick understanding of your condition, history, and medications. Preparing in advance will allow you and your doctors to spend most of your appointment time discussing next steps like tests and treatment plans. Make sure to update as things change.

          National Organization of Rare Disease - Rare Action Network logo

          Ask Congress to Support the National Institutes of Health!

          The Fiscal Year 2022 (FY22) appropriations process is underway! Members of Congress are weighing in with appropriators on funding levels for federal agencies. Senators Bob Casey (D-PA) and Richard Burr (R-NC) are circulating a “Dear Colleague” asking their fellow Senators to sign onto a letter supporting strong funding for NIH in FY22. Many treatments for rare diseases have been developed from the work done by the NIH, and it is critically important to ensure this support continues in order to help current and future generations.