Tuesday, September 25, 2018

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 http://www.porphyriafoundation.com/drug_database/drug-list.php?cl=&t=&g=&b=Desferal&co=

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

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