EPP Stories

Hello, my name is Charissa and I am a 42 year old woman. I just recently received the diagnosis of EPP last year. I am married and have 3 children. My oldest child Ashley also has EPP. My two other children do not have EPP.

I am now going to tell you my story and the long road to my diagnosis, but first I am going to tell you a little about my background so that you will be able to follow the story a little bit better.

I have moved a bit internationally, but now I live in province Limburg in Belgium for more then 9 years. I have lived in Germany, The Netherlands and 16 years in The States.

As long as I can remember from an early age, I have pains and swelling. Been often to doctors and have seen many emergency rooms. I got a different explanation every time: arthritis, growing pains, hypochondriac. Every swelling or bruising was explained as due to my active sport and leasure live. I learned to live pain, never knowing wat was wrong with me. As a child I already avoided exposure to the sun, I rather lurk in the shadows or simply stay inside. As a young adult I complaint about many pains but the cause was never found. The explanations were: stress, sport trauma, arthritis, there is nothing wrong with you live with it. During my menstrual cycle I had often problems with a light anemia. My blood pressure was always low. I never associated my pain and swellings with light sensitivity. If I told a physician that strong lamps gave me problems or made me sick, I was called a hypochondriac and told that it was not possible. I soon learned to be silent and keep on going when going did not go. I suffered in silence.

When I was a teenager, I tried to worship the sun like many other teenagers, but instead of getting tan I had pain, red skin and swellings. I used to be mad because my legs were always very white and never changed colour. It was obvious that I missed the Indonesian genes from my mother. I remained very pale and white or sometimes very red in combination with a massive headache. When the sun shines I always were glasses, the light was always too strong for me and my eyes hurt.

When I became pregnant with my daughter in the States, during the summer months I had terrible swelling and pain. I was admitted in the ER with a blood pressure of 210 over 160 while I normally about 80 over 60 had. Pre-eclampsia was the diagnosis. I remained in the hospital for months. During the delivery I had a light anemia and lost a lot of blood. I was in need of a blood tranfusion.

When I moved back to Europe in 1992, I started seeing lots of doctors again. I had the feeling that no one was taking me serious, everything was “stress” related and I loved to pull all the attention to myself. When my daughter had pain while still a baby or did not want to go outside, I understood her. I felt the same. I just found it strange that she had the same symptoms as myself. I used to tell her that her pains were growing pains, just like I used to be told. However, I gave her some tips and tools to help ease her symptoms, like cold wash clothes, ice packs, cold showers. It helped a bit.

I can still remember a summer where my daughter and I had our feet and hands in bowls filled with ice cubes and water, just to cool and ease our pain.

In the late 90's just before moving to Belgium I had 2 operations on my right shoulder. After the operation my skin started ulcering, I had terrible swelling and my skin lay open. Shortly after my arm grew stuck and I could not move it any more. I got osteoporosis on that arm, lost my muscle tone and had terrible pain. Two years of painful therapy and torture sessions in pulling my arm lose and learning to use my arm again. The diagnosis then was algoneuro dystrophy.

The following years I realised that I started sweating less and less. I also was more often tired, exhausted and had a lot of pain. Daily chores became impossible. The swellings appeared to get worse and I was gaining a lot of weight through retention of fluid.

In 2006, I had again 2 operations short after each other for another reason. My body crashed completely then. I was always tired and had lots of pain. I went to all kinds of specialists. Almost every type I have seen. One specialist told me that all my problems came because I was too fat! I received all kinds of different diagnosis, chronic fatique, fibromyalgia. I always felt that I had an underlying condition that caused all these symptoms and misery.

My daughter's condition also got worse and worse. I started searching the internet to find the cause of our problems. What I thought to be the problem was very near to the final decision. I send my daughter last year to the dermatologist of my husband in Hasselt. My husband spoke to well about her and I followed my instincts to send my daughter to her. She immediately suspected a light- or sun allergy and send my daughter to Leuven for more testing. The diagnosis came for her shortly thereafter. Mine a little while later. Isn't unbelievable that it took zo long for a diagnosis. And believe me, I am pretty verbal and a fighter.

Looking back I realise that most op my problems over the years are a result of my EPP and I now have also CFS because of the EPP. I did not know that I had EPP and did not protect myself enough. I am starting to slowly feel somewhat better and my health is finally going in the right direction.

In October 2008, I had a gallbladder crisis. I had to wait for an operation to remove the gallbladder because the operating room needed to be adjusted with special filters. On December 5 I was finally operated the classic way because I had light reactions in the past (even from laproscopic lamps). I now have a very large scar above the liver. The wound did not heal very well and took a long to heal. I also had a phototoxic reaction on the filtered lamps. I have a burnmark still visible today on my stomach and I have no feeling at all on the exposed skin, even today.