Monday, November 7, 2016

Gail Hubler & AIP Story

I am Gail Hubler and I have AIP (Acute Intermittent Porphyria).

 It was dormant until I had a tetanus shot at age 53.

 I had some issues with pain through out my life but thought it was from standing too long at work and from accidents in car and falls. When I got home from the hospital my entire body had changed and I was trying for seven years to find out WHY!

 I had every test know to man and beast but found nothing wrong, thus, it's stress from your job. So I quit my job which didn't help. 

One day my neighbor found an article in the newspaper in the section where you ask a Doctor questions. This man's symptoms were just like mine and so many weird ones I thought this has to be it. My Doctor said he has only had one patient with Porphyria and he was from Wales.


 Most of my relations came from Wales.  During an attack, I was tested and found out. I have battled how to keep myself from attacks for eight years now.

I Have had to get off some of my medications and change some of them to another type so that they were safe to take with an Acute Porphyria.  I have not had a drink of alcohol for 13 years. When I had a drink it would make me so sick, I knew it had to go.

 Before I was diagnosed I couldn't understand why previous I had a drink on weekends for years. I was always confused and could get lost in a card board box...once I found out that was clear to me. 

So many things to watch out for and it's still a daily struggle to stay well. Tired all the time from anxiety. My worse attack came before I knew I had it and it was in the hospital after surgery! 

I had to educate myself on this disease and try to help others if I can. I swim and take medication and manage it to the best of my ability.

Thank you  Gail for sharing a brief glance of some of the changes you have made in your life to keep your AIP from flaring.  For more tips from the Porphyria Experts please visit: www.porphyriafoundation.org under Acute Porphyrias

If you would like to share you story on your Porphyria please email me directly to Amy.APF@gmail.com

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

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