Wednesday, June 25, 2014

Listen with Your Heart- Part One

When someone close to you who has Porphyria starts to talk about the disease, do you change the subject? Do you stand in silence, worried that you'll say the wrong thing?  Say nothing at all and walk away? Are you tired about hearing about the problems?  If so, you share these feelings with many others.

How do you talk to someone who has Porphyria?

When talking with someone who has Porphyria, it is important to listen.  Try to hear and understand what the person is saying about he or she feels.  Don't make light of what he or she is saying or try to change the way they are feeling or acting.  Put your feelings and fears aside.  Let the person know that you are open to talking whenever they feel like talking.  Or if the person doesn't feel like talking that's OK, too.

In these series I wanted to share some helpful ideas on how to be supportive and helpful when you talk to someone who has Porphyria.  You can learn how to make the person with Porphyria know that they have someone they can truly count on.  We call this kind of communication "listening with your heart."

Next week well touch on how Porphyria affects the person, the mate, family members and friends and why we need your support, love time and attention.

"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 . ...