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Jessica's Story

 

My name is Jessica Betterridge, and I am currently completing my Honours in a Bachelor of Architecture and Construction Management (Hons) at University.

 

I was diagnosed in March 2014 with the chronic disease Hereditary Coproporphyria (HCP) which is genetic and is known as an acute hepatic porphyria. Doctors have yet to establish from which parent I attained the disease as both my parents are asymptomatic.

 

At the present time my disease is quite active and the problem with porphyria is you never know when an attack is going to take place. It could be at any time, on any day, HCP does not care what commitments or plans you have. 

 

My main symptoms from HCP are very severe abdominal pain, paralysis, weakness, seizures, fatigue and changes of my consciousness (comas). I have been admitted to the ICU on a number of occasions in the past six months with paralysis so bad I could not support my own breathing, In this last year I have spent more than 200 days in hospital. This makes my disease life threating.

 

My doctors have stated that HCP resembles Guillain Barre syndrome and appendicitis all in one. At present I am currently seeing a large amount of medical specialists, who are very dedicated and quite frankly amazing. They put large amounts of their own personal time into my care and into the improvement of my quality of life. This dedication has allowed me to remain living independently and in full time study despite the many challenges of my daily life. 

 

It is only after a year of constant treatment that I am seeing the changes in my energy levels, which is allowing me to actively participate in University activities and continue my work as a student ambassador.