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Acute Intermittent Porphyria Story of Jessica Melton

Jessica Melton

Acute Intermittent Porphyria

My name is Jessica and I have Acute Intermittent Porphyria {AIP}.  I was unofficially diagnosed at nineteen years old, and then officially diagnosed via DNA testing at the age of twenty-five.  By the time I was nineteen, I had already endured over ten surgeries, including several exploratory surgeries to try and find the root cause of my unexplained abdominal pain.  
I was lucky, my hematologist started me on Panhematin.  When the treatment was done, I could not believe it, my pain was gone for the first time in my life!  I am now thirty-five and I still receive hematin on a regular basis.

Unfortunately, due to the chronic nature of the disease, more damage has been done to my nerves and organs.  I was diagnosed with gastroparesis, neuropathic pseudo-obstruction, seizures, and Tourette syndrome.  The icing on the cake is an extremely elevated ferritin level.  This, we believe, was caused by the hematin.  For two years now, I have been getting weekly inpatient 24-hour intravenous treatments ** to strip the iron from my body.

Despite the constant uphill battle with this disease, I was able to graduate with my associate’s degree in special education and my paralegal certificate.  My life is certainly not perfect, but one thing is for sure; if I can overcome all of this, I can do pretty much anything I set my mind to.

Jessica Melton

Thank you, Jessica, for your courageous fight and determination to not allow Porphyria to overtake your joy for accomplishing your goals.  Congratulations to you!

**If you would like to learn more about Acute Intermittent Porphyria or the Medications or Procedures used please contact the APF~ 1-866-APF-3635

·       Drug- Desferal- ANTIDOTES- OK! Not porphyrinogenic

          Please talk with your physician before Starting/using/stopping any drug. 


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The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…