When I got home, the first thing my mum did is to take me to hospital. I only agreed if she took me home again. She had to promise as I thought they would not believe me anyway! They took a blood and urine sample. My mum took me home. Early in the morning, the hospital phoned and said for her to bring me back to hospital as they knew what I had. They left my urine standing and it turned purple! Finally, I had a diagnosis after 7 long years to hell and back!! I was suffering from Acute porphyria. The doctor said if I waited another week I would not be writing to you now!!
My Porphyria was very active now. I had flare-ups with every hormone change .I haven't been drinking a lot of alcohol before and now I don't drink at all. I am very careful with medicine.
It’s the best thing I ever did. My doctor is fantastic. He changed my life. First of all he believed me. I got a port. He registered me as a chronic pain patient. This enables me to get pain relief. I don't get stressed anymore. I am well enough to work full time. It’s not all rosy if I end up in hospital, I still get doctors who won't believe my pain. As soon as I sense disbelief, it catapults me back to those years of hell, and I feel I have to fight for my life.
Since being able to share story’s and have the privilege to meet other porphyria sufferers from all around the globe and finding out about the American porphyria foundation, it gives me hope for the future. Not just for me but also my daughter and grandchildren.