Acute Intermittent Porphyria (AIP)
Acute Hepatic Porphyria Ambassador
Hello! I’m Alicia, . and I have acute intermittent porphyria (AIP).
When I was asked to share my story, one of the questions that came to mind was, “How would I describe my personality?” So, I decided to send my family, close friends, and work colleagues a message asking what they thought about me. The main points that came back were 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. 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 mean everything to me; Julia, Ben, and Michelle are all younger than me. I’m the only person that can make them cry; if someone else upsets them that’s it—WAR! I’ll do anything to protect them, and truthfully, without them, I wouldn’t be where I am today.
Before I got diagnosed with AIP, life was pretty normal. 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 reached 18, and then partying when we reached 18. I was a very strange teenager because I didn’t like drinking. Instead, I decided 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 bought 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, here comes the hard bit: talking about the thing that hurts me most in this world, acute intermittent porphyria. It all started because I caught a simple chest infection, and like everyone else, I went to my doctor to ask for some antibiotics. What we didn’t know is that porphyria attacks can be triggered by certain medications. Within two days, I started getting symptoms of tummy pains, sickness, fatigue, confusion, and hallucinations, 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. 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 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 there. 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. Porphyria…What’s porphyria? No one at the hospital had heard of porphyria, and it took a professor from a university hospital in London to organise the testing. Within two days, I was given a diagnosis and the correct medication to treat the porphyria attack. I was on the road to recovery—or so I thought.
Once I was well enough to understand what was going on, a doctor from the hospital in London came and spoke to me to explain what porphyria was. He said AIP is basically like a blockage in the road. My body can’t make a certain enzyme, which causes toxins to build up. I wasn’t given any kind of leaflet or booklet explaining porphyria, like you get with other more common diseases. Nothing. That’s it—we are on our own.
I was only 19 at the time, and it was very hard to understand that I was different, that I now needed to be extra careful. I was in denial. I didn’t want to believe I was ill—didn’t want to believe I was different. So I just 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. Every single period after this first attack caused recurring attacks, landing me in hospital for no less than two weeks at a time. So the decision was made to medically stop my periods to see if this would help, and it did for nine months. Great. I thought I could just continue on with my life—I was “normal” again.
After nine 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-threatening attack, paralysation, and six months in two hospitals for me to realise that actually I am different. I am really poorly, and if I didn’t listen to my doctors, I could die.
During those six months, there were times my mum was told I wouldn’t make it. I had to learn to walk again because the porphyria had caused an excessive amount of nerve damage to my legs. Everything I touched hurt; the sensations felt really weird. I didn’t like people touching me. All of this put an emotional strain on my relationship with my partner, my family, and my friends. But they stuck by me, through the good, the bad, the ugly—especially my mum. They were always by my side, saying, “We can do this. You’ll learn to feel your legs again. You’ll learn to drive again. We will get through this.”
After I got out of the hospital, I knew I needed to slow down and stop being so stubborn. So I stopped work altogether and decided 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.
I made the decision to volunteer with a sporting events company, helping out at their events. And after about a year, they offered me a part-time admin job. I also got involved with the British Porphyria Association, fundraising and helping spread awareness of the disease. It’s quite nice to meet people from around the U.K. living with AIP, to hear their stories and how they deal with their situation.
Well, it’s been years since my diagnosis, and I’ve learned a lot about dealing with AIP. I’ve had nearly too many porphyria attacks to count, and my life has changed a lot since I started my weekly infusions.
For my infusions, a nurse used to come to the house every week, but after a while, I got tired of being stuck to their routine. I loved seeing the nurses, but I felt restricted on what I could do and where I could go. I wanted a little bit of control back over my body, so I asked if we could learn to do it ourselves. Now my partner’s trained and my mum’s trained to give me my infusions, and this gives us a lot more freedom. I like going on holiday—visiting family in Spain or Australia—and now, it’s easier to do that.
I’ve learned that my attacks are mainly triggered by infection and stress. Usually, if I’m working, going out, and doing things non-stop for five or six days, my body will go, “What on earth are you doing?” and the pains and the tiredness will start. Sometimes my family or my partner has to remind me, “You’re doing too much. You need to slow down.” My brother Ben especially picks up on the signs quicker than I do. He notices when I’m not feeling very well and will tell me to eat properly or to take a break. But I’ve gotten very good now at listening to my body and knowing when to stop and rest.
Every attack continues to damage the nerves in my legs, causing me to have a drop foot or even limited movement where I have to go back onto crutches and attend physical therapy. Even between attacks, I can trip or fall at any time. Then, there’s the chronic pain. I would say I have 30 percent good days, and 70 percent bad days. Even on the good days, there’s a dull pain that’s always there regardless of how many pain medications I take. It’s annoying, but I’ve found the best way to deal with this pain and attempt to continue life to the best of my ability is by spending time with family or friends.
At the beginning of 2022 I had another attack and we was told the infusions were no longer working to keep my levels down so on the 21st April 2022, I had my first injection. I was scared and excited, weekly infusions had been my life for 5 years and now all of this was going to change for a monthly injection! But sadly, it hasn’t been plan sailing, we was told at my 3rd injection that the treatment wasn’t working as well as it should be and we might have to. I was so angry, “this life saving treatment” wasn’t working! I was angry, upset and annoyed. I was at the point of stopping everything. Stopping the medication, infusions and injections because I was fed up with hospitals and appointments. I was tried. I wanted to be normal. My mum and professor managed to persuade me to keep going, they explained that because I had been so poorly it might take longer for the injection to take effect. Well thank god I listened because finally after round 6 of the injection it was taking effect and my porphyria levels were lowering. Perseverance is key.
Currently, I live with my partner, Ricky, and our cats. I’m still with the same company, and I love my job. 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 coffee dates and shopping a hobby, but what I love to do is spend time with my close friends and family.
Life isn’t easy with porphyria, and it’s really hard to accept that we are different and we can’t always do the things we want to do. For instance, I can no longer use my right foot. I have no feeling in it and was worried I wouldn’t be able to drive again. I loved my freedom. Luckily, someone told me about mobility cars, so I now have an adapted car. Honestly, I’m not sure where I’d be without the people in my life sticking by me when I was stubborn. There were times when I thought, “I can’t do this anymore. It’s too painful. What kind of life is this?”
But I kept going, and it’s because of my family and my friends supporting me, saying, “You can do this,” and pushing me through. I know the diagnosis was initially quite scary for my siblings, but I think it’s only made us closer. They’re always texting me to see how I’m doing and when I’m in hospital, they’ll come and visit. Thanks to their support, I try to have a “can-do” attitude—I can work, I can travel, I can get through this.
I don’t know what’s going to happen in my future, but I know I will keep fighting for the porphyria community, especially now that my sister Michelle has been diagnosed with AIP. If I can share my story, spread awareness, take part in studies, and stop my sister and my future children ever experiencing the same pain and troubles I went through, then I will do whatever it takes.
So I guess my family and friends were right: I am determined (sometimes stubborn), and I’ll do whatever I can to help others. People also say that I’m strong, but that’s where they’re wrong. No, I’m not strong—I’m actually continuously scared and frightened. It’s because of my partner, siblings, family, friends, my Greek family, my co-workers, and because of the British Porphyria Association, I am as strong as I am. I’m only as strong as my support.
For those who don’t have support, I’m here to say you’re not alone. There are porphyria associations; there are people out there who can help. You just need to take the first step to find it—reach out. And just like my family said to me, “You will get through this.”