Monday, February 2, 2015

The Doctor- Patient RELATIONSHIP

When facing Porphyria disease, your Doctor his/her team and the partnership formed among everyone involved are keys to a positive experience and the best chance of a good outcome.

In a patient, and family-centered care approach, your doctor provides an open and trusting atmosphere where you and your family can tell your story, share what is important to you, express your concerns and worries; learn about your diagnosis and treatment options; and work together on making decisions about your care that fit your values, life situation and goals.  It is also finding humor when possible; chatting about everyday things; celebrating successes and sharing sad times if facing difficult times.  In this relationship you feel respected and valued as a person and feel empowered to take an active role in your care and any decisions affecting you.  

If you and your loved ones, have this kind of relationship with your doctor and team, you will have a positive experience, but you might ask how this partnership with your doctor and team help your chances of getting the safest and best care to support your treatment and life goals.

Please stay tuned for helpful hints in the next blog...

"Remember.....Research is the key to your cure!"

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Genetic Changes in Porphyria

Each form of  porphyria  results from mutations in one of these genes:  ALAD ,  ALAS2 ,  CPOX ,  FECH ,  HMBS ,  PPOX ,  UROD , or  UROS . ...