Skip to main content

“What I Wish I Knew”

“What I Wish I Knew”

When I was first diagnosed with Acute Intermittent Porphyria I was initially shocked.  I struggled with the news and then I pulled myself together.  I experienced many different emotions and often felt I would somehow make sense of it and get past it as soon as possible.  I wanted to power through it and get my life back again.  I closed myself off to lots of support along the way believing I shouldn’t ask for help or expose my “weaknesses.”  When I look back on it know, I realize though I am coping the best way I know how, there were so many things I wish I had known that would have made it easier for me, and probably my family and friends to. 

Knowledge is Power: What I wish I Knew
“I’m not going to talk to anyone about my Porphyria,” I said
Have you ever said that?
“Where can I Find Information”
I felt lost, scared, emotional, could my family really understand?
Did they want to understand? 
Did they believe me?  Did my Doctor even believe me?
Now that I understand what care is needed I asked myself?
Who am I going to find to Bring with ME? Do they want to go?  Will they support me.  Will they say I am crazy?
I have Never asked for Help Before!
It’s too hard trying to communicate with my family, friends with phone calls and texts while I’m so sick, why bother I asked myself?
Do I need a special group to go to?  They will think I’m nuts……
No Im just going to stay inside and sleep it off.
Is this stress, or anxiety, fear, am I going to die?

What am I going to do? Who will I turn to who will help me?
I often ask myself these things and it’s important to journal, talk to a trust friend and family member, pray, start searching and don’t stop until you get an answer good or bad, learn to be patient and kind.  Be firm when you should, be your own advocate! Teach, read, watch do all that you can so you can conquer correct your lifestyle do what you must do, so that at the end of the day you can say I have done my very best!  Don’t stop there.  Start all over when you wake up…..

Amy L Chapman
Acute Intermittent Porphyria
I will survive!


Popular posts from this blog


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

Happy Winter Season!

                  Happy Winter Season!