A 26-year-old woman became completely paralysed and could not even move her tongue before doctors later realised her contraceptive pill was causing her body to shut down.
Account executive Katrina Parra, from Venezuela, began struggling with abdominal pain, anxiety and vomiting constantly from the start of 2012, but doctors could not diagnose what the problem was.
By December 2012, Ms Parra’s symptoms became worse as she constantly felt cold, her body
was weak and frail and she was placed in an intensive care unit (ICU) over the holidays.
But doctors could not diagnose the illness, even drawing the conclusion Ms Parra had a psychological problem and she needed to see a therapist.
Without a diagnosis, Ms Parra continued to decline and became completely paralysed.
For more than a week she lay in ICU, awake but unable to move or communicate.
After eight months of painful symptoms and hospitalisation, doctors finally diagnosed Katrina with acute intermittent porphyria, a genetic disorder which affects the production of haemoglobin in the body.
The genetic deformity can be unknown until symptoms are triggered by a certain factor.
In Ms Parra’s case, it is thought the factor which led to her condition spiralling was her birth control pill.
Time in intensive care
Now, after having treatment for her condition and stopping her birth control, Ms Parra has
made a strong recovery and is now a fitness instructor.
“In 2012 I started to vomit a lot and I felt abdominal pain, anxiety and I felt like I needed to
bathe in hot water for hours as if I’d been poisoned,” Ms Parra said.
“I went to the clinic and the doctors did tests but the tests didn’t show anything was wrong. I was still taking my birth control and four months later, on December 24, 2012 I felt awful again. I had chills, a high temperature and no strength in my body.
“I went to a clinic again where they diagnosed me with septicaemia and they put me in ICU
for a week, until the new year. It was awful, but the nurses took good care of me. They put me in a room and nobody was allowed to visit me unless they were completely covered so I was protected from germs.
“Doctors did a lot of tests, but my symptoms only got worse. I was vomiting, hallucinating, I
had abdominal pain, leg pain and I was just really going crazy.
“Days passed, and I didn’t get a diagnosis. My mum was really stressed about my condition,
but I had such a huge support from all of my family.”
‘I just wanted to die’
Ms Parra said her doctors started giving her medication which they did not realise they could not give her because it had a negative effect on her porphyria.
“I was intoxicated and feeling worse every day. I just wanted to die and be finished with the whole nightmare,” she said.
“One day, my doctor told my mum he thought it was a psychological problem and I should
be seen by a psychiatrist. She couldn’t believe it and she got so mad.
“Conferences were held in the clinic, but no doctors could think of a single solution or diagnosis.
“I was vomiting a lot but the only thing I continued taking was my birth control.
“Birth control can be known to trigger porphyria, and all of my symptoms began when I started taking the pill. No matter how ill I felt, I still didn’t stop taking the pill.
“Because of the difficulty in receiving a diagnosis, I started to become paralysed and it got
so bad that I couldn’t even move my tongue.
“They put me back in intensive care where I spent days completely awake but not able to move any part of my body.
“I couldn’t speak or move, but my body was in a lot of pain and I just wanted to die.”
After first being taken into hospital, it was another two months before Ms Parra could leave the hospital.
Long road to recovery
Eight months after her spending over a week in a full-body paralysis, her doctors finally discovered her condition was acute intermittent porphyria and they were able to successfully treat her relentless symptoms.
Acute intermittent porphyria is a genetic disorder caused by a mutation in the body’s production of haemoglobin which can be brought on by drugs, medication, excess alcohol, infections or other factors.
There is no cure for porphyria, but it can be treated by stopping the medication causing the
attacks and by injecting the body with haemoglobin to compensate for the body’s lack of it.
“I needed a lot of medical attention because my body was totally paralysed, and I was in a
lot of pain,” Ms Parra.
“The pain was so bad that the only thing that could relieve me was morphine. Doctors even
say that the abdominal pain is very similar to giving birth.
“When they finally diagnosed me, I felt so relieved. We would finally be able to treat it and
I’d understand how to live with the condition.
“Each month for two years, nurses came to my house and they put the porphyria treatment
straight into my vein as I was having porphyria attacks every month.
“I also had physiotherapy three times a day to regain my strength and ability to move. While
I was paralysed, I lost my voice and so required a vocal therapist.
“My physiotherapists really gave me the best support and I owe them a lot. I wanted to feel
good again and to have my life back.
“The recovery was slow though. It took me two months just to be able to move one finger again. By two months I could finally make the first sound with my voice.
“I was trapped in a bed for five months and I remember when my physiotherapist stood me
up for the first time, I started to cry because I couldn’t stand up by myself.”
‘My toes are still numb’
Since beginning her recovery journey, Ms Parra has had a positive attitude for the last five years as she battled to regain her life.
She made her first steps nine months after her diagnosis and it took over two years to make a full recovery.
After recovering from being bed-ridden for five months and unable to move her tongue, Ms Parra has now achieved her goal of becoming a fitness instructor.
She also spoke about how she hopes to educate more people on the condition which nearly took her life, and to help those who are dealing with it themselves.
“I haven’t had a porphyria attack for three years now. I take good care of myself now – I
can’t have any birth control obviously, I don’t drink or smoke,” Ms Parra said.
“To this day, my toes are still a little numb and they don’t move as they used to. It doesn’t
bother me though because I can walk normally.
“I have just achieved my goal of becoming a Fitcombat teacher, but my biggest goal is to
create a porphyria foundation to help others. People die from porphyria because of the
difficulty in diagnosing it.
“I don’t wish that on anybody, it’s awful. Just thinking about it gives me the chills. I really
didn’t care if I died, I just wanted the pain to go.
“Don’t give up, you can have a totally normal life afterwards. Take care of yourself and stay
positive. We need to spread the word because there’s not enough information about this
You can follow Ms Parra’s account on Instagram @somosporfiria where she shares her own
progress as well as the stories of other people suffering with porphyria.