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Porphyria Educational Services


Vol. 2 No. 8
February 20, 1999

FOCUS: Porph  Patient Record Keeping
  You may well ask why this subject for a weekly bulletin. Why?  Because those who have had a long time diagnosis and have learned much along the way can tell you how important   patient record keeping can be. Such documentation can be an asset in obtaining a porphyria diagnosis. Moreover, such record keeping is essential in apply for SSI disability.   Some good advice follows:


1. Keep a Journal. Document on everything immediately. Do not wait to get sicker!

            Days sick.

            Work impairments.


            Physical impairment.

            Mental impairment./ Cognitive function.

            Visual impairment.

            Ability to operate machinery [including a car/]

2. When dealing with  employers, medical insurance, medical providers,

    and especially social security, make photocopies of everything you send, and

    everything you receive from them.

     Record telephone contacts.

3.  For every letter they write-write one back.

     Leave a paper trail so your files have everything.

4. Educate yourself and be pro-active when it comes to your disabilities.

   . Don't miss a detail .

     Write down questions and then ask questions that you have writen down.

5. Give the doctor the list of questions and ask him/her to reply in writing.

6. Have pictures taken of you now, and then as problems occur..

7. Tape record when you visit the insurance doctors.

8. When the doctor writes a report ask for a copy of that report for your files.

     Remember that you as a patient can have copies of all of your medica; records.

     Usually the initial copy is free and subsequent copies require a handling fee of $10-25.

     Be sure to have a  copy of EVERY test that has been given you and write notes about

     your condition when you underwent the test, how the test was carried out, and an errors

    or elements that could have compromised tests and showed a lower value or negative

    results. Remember low scores keep a lot of porphyrics without a confirmed diagnosis.


9. Get a copy of your file from workers compensation.

     There is a charge for a copy of your file, but it is well worth having when

      you need to file for any number of benefits.

10. If government agencies they turn you down for any reason

       contact  Patient Advocacy  and a Works Advocate.

        Both are free.

    Appeal every negative decision.

    Be firm and hang in there.  Do not give up.  You have rights.

11. When dealing with any insurance company you have to be firm>

       Insight:  Remember they don not care about you!

12.  Join a support group. Share with others their insights.

        Others have had to travel this path before you and can help you.

13. Take care of yourself-

       It is important to heal in all areas of your life.

       Insight: Remember the bottom line is they do not believe you and their job

      is to get you back to work and be done with it!