The story of Alicia
Hello! I’m Alicia, I’m 26 years old and I have Acute Intermittent Porphyria (AIP).
Oh gosh where do I start, I currently live with my partner of 6 years, Ricky and our cats Peppa, Foxie and Addy. I guess I would explain my personality as being loud, gobby and family orientated. When I was asked to write a story about myself, one of the questions I thought about was what do other people think of my personality? So I sent all my family, close friends and my work colleagues a message asking what they thought about me. The 3 main points that everyone came back with was that I am generous, always going out of my way to help others, determined and STUBBORN!
But the message I received from my younger sister, Michelle, had me in tears for 5 minutes. She said I inspired her. Now that might not seem like a lot to some people but to me it meant the world. My siblings are everything to me; Julia, Ben and Michelle are all younger than me. I’m the only person that can make them cry without getting angry; if someone else upsets them that’s it – WAR! My mum always tells the story of me being at my brother’s football matches. If Ben gets hurt or pushed that’s it – I’m the first one on that pitch picking fights with children 10 years my junior. How nasty does that make me sound, haha!
I grew up with my mum and Ben in Gillingham from the age of 9, but I was originally from Croydon. My mum and Dad split up when I was really young and my Dad went on to get married and have my sisters, so I guess you could say I have two families. I work for Medway Sport and I love my job; I volunteered for them for about a year, helping out at their sporting events and then I was offered an admin job off the back of that. My work colleagues are like my family at work, they are always there to support me, guide me and help me whenever they can and they are a great bunch of people and always up for a laugh.
I don’t really have many hobbies unless you class Starbucks dates and B&M shopping a hobby but what I love to do is spend time with my close friends and family. I don’t have many friends but the friends I do have are gems, they are precious and very rare.
BEFORE DIAGNOSIS
Before I got diagnosed with AIP, I was working by the age of 15 at a fish and chip restaurant and most weekends I was out with my school friends, going shopping before we were 18 and then partying when we reached 18. I was a very strange 18 year old because I didn’t like drinking, I didn’t like the smell or the taste, so I decided then that when I reached 17, I would learn to drive so I could safely take my friends home after a night out. I also wanted my independence, I wanted my freedom! So that’s exactly what I did, I passed within the year and my employers at the time brought me my first car, a little Ford KA. I’m still in contact with my first employers and I wouldn’t even call them employers, I would call them my Greek family. They taught me some very important life lessons and skills that I still use every day now. That pretty much sums up my life before I fell poorly.
DIAGNOSIS
Now here comes the hard bit, talking about the thing that hurts me most in this world; Acute Intermittent Porphyria. I first got diagnosed at the age of 19 on the 14th March 2014 at Medway Hospital. It all started because I caught a simple chest infection, so like everyone else I went to my doctors to ask for some antibiotics but what we didn’t know was that porphyria patients are allergic to many medications. So I started these antibiotics and within 2 days I started getting the symptoms of tummy pains, sickness, fatigue and confusion but being the stubborn person I am I continued to work and carry on with my life.
While I was at work I started having problems with my breathing and the pain in my tummy was crippling so my employers rang my mum and the ambulance and before I knew it I was getting rushed into hospital. I can’t really recall what happened in A&E or what happened for the next 10 days. According to my family, it was the most terrifying thing they’ve ever seen! I wouldn’t stop crying in pain and I was very reluctant to allow people to touch me. I wouldn’t eat, or sleep. I just wanted the pain to stop. I didn’t want to be here. I wanted it all to end, however that end may be. I was tested for cancer, for countless amounts of infection, for a hernia but they all came back clear.
Somewhere down the line it came out that my Nan, on my Dad’s side, has porphyria and whether I had been tested for it ……….. Porphyria …….. What’s porphyria? Porphyria hadn’t been heard of by Medway Hospital and it took a professor from Kings College Hospital in London to organise the testing and within 2 days I was given the correct medication to treat the porphyria attack and on the road to recovery. Once I was well enough to understand what was going on a Doctor from Kings and Medway came and spoke to me to explain what had happened and what porphyria was. I wasn’t given any kind of leaflet or booklet explaining what porphyria was, like you get when you get cancer, I got nothing and felt like… that’s it we are on our own!
It was very hard at the age of 19 to understand that I was different, that I now needed to be extra careful. I didn’t want to believe I was ill and I ignored all the symptoms and signs I was experiencing, all the pain in my body. I was told I would need to eat properly and rest more. Well I wasn’t having that – I carried on not eating properly and continued to work and party.
What was it that people were calling me at the beginning? Stubborn, maybe they are right! Well none of this worked in my favour and every single period after this first attack I continued to have recurring attacks and land myself in hospital, spending no less than 2 weeks at a time. So the decision was made to medically stop my periods to see if this would help, and it did for 9 months! Great I continued with my life, I forgot I was poorly, I was normal again.
After 9 months my body became immune to the medication and I had another attack. So I made the decision to slow down a little. I continued my work but stopped going out every weekend. This helped, but not by much. Sadly, it took a life threating attack, complete paralysis and 6 months in two hospitals for me to realise that actually I am different, I am really poorly and if I don’t listen I could die. This put an emotional strain on my relationship with my partner, my family and my friends. I had to learn to walk again because the porphyria had caused an excessive amount of nerve damage to my legs. Everything I touched was hurting, the sensations felt really weird. I didn’t like people touching me. So after this attack I stopped work all together as I wanted to concentrate on my recovery and maintain my relationships with people. I took a whole year out of work but mentally I was struggling. I’m not that sit at home girl. So I made the decision to volunteer and that’s how I got my part time job at Medway Sport.
MY LIFE NOW & MY FUTURE
Well I’ve had 23 porphyria attacks in just coming up to 7 years and my life consists of having a weekly infusion of haem-arginate to help minimise my symptoms and attacks. I have 70% good days and 30% bad days. I’m very good now at listening to my body and knowing when to stop and rest.
I help the British Porphyria Association spread awareness on the disease and I’ve also taken on a role as a Porphyria Ambassador in the UK with a company called ‘SNOW’ as I want to share my story and let others know that they are not alone. Life isn’t easy with porphyria and it’s really hard. We are different and we can’t always do the things we want to do.
I don’t know what’s going to happen in my future but if I can spread awareness, take part in experiments and studies and stop my sister ever experiencing the same pain and troubles I went through…. I will.
People say I’m so strong, but I’m actually continuously scared and frightened. The reason I am strong is because of my amazing support. It’s because of my partner, siblings, family, friends, my Greek family, my Medway Sport team and because of the British Porphyria Association, that I am as strong as I am. I’m honestly only as strong as my support!