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Ioana: Parry Romberg Syndrome

Romania

Hello! My name is Ioana from Romania. I know my story will be very long but I have to explain everything since the debut of the disease because my doctors here won't believe me and I don't know what else to do. Now I am a member of the the Parry Romberg Syndrome support group, and they really helped me.

I will never forget the day it all started and I remember clearly. I was in sixth grade I had a contest at school called "The code of good manners," and before it I had a contest between schools at math. I did horrible that day on the test and could not solve most of it. I got 3 on a scale from 1 to 10. I was very ashamed and I could not tell my parents. At the contest at school I was so sure I was going to win but I only got the second place which is not that bad but I worked a lot to take the first.

That morning when I woke up I a rash under my right eye. It was about 1 centimeter, but I thought it was because I cried the night before so I did not see it as a problem that time. The days went by and it got bigger. It went along the nose and under the eye and stayed that way for almost a year. I knew something was wrong because that area was very sensitive to heat, cold or pain, but who would listen me? I was just a kid. I remember when I went to the first dermatologist with my father and the doctor said, "Mister, you know how kids are, playing all together…in garbage, and they don't wash that often," and so on. I was really offended. I tried to tell them that when I had it I did not go out from the house for days, weeks, but my father rather believed the doctor. After all I was just a kid!

By the eighth grade the rash went down near the mouth and under the chin. The skin in that area was like a bit higher than the rest of the face. It was very shiny like I had been burned with hot water, but still no one saw it as a problem. Then the skin started to get hard and soon looked like a bruise. It got harder and more painful but still that was not a problem for them.

I saw a dermatologist in another town and he said it was scleroderma but he never gave me papers so I can prove it. He said it was no biggie and that I will be just fine. If it won't stop from the treatment then he will do a surgery when I am eighteen.

I was so happy then, but soon it started to look worse. He did not give me any information about that disease so I went to see another dermatologist in my hometown but with no papers to prove my diagnosis they acted like nothing was there.

Around tenth grade, I don't remember exactly if it was before or after, I began to do a crusade. I saw a doctor from a university and she agreed to see me. She stood by my other doctor until recently, but she never informed me about my condition. During all this time they just took pictures. They took me to their classes so the students at medicine can see me. From their point of view it was amazing, beautiful. I can express my feelings in that moment; I thought they were mocking me.

So I fought and went with a foundation to see other doctors. That decision created huge scandals at home. My parents thought I was overreacting but in my heart I always knew it was more than that. I went all over the country. The doctors all confirmed the diagnosis but when I wanted information about the disease scleroderma, no one answered.

In 2006, I went to Bucharest, the capital, to see more doctors. One did me a test to see if it was systemic and the test was good. She sent me to another doctor and he asked me to do a test (elisa…boriella?); I don't know exactly the name but on one of the records he wrote "The Parry Romberg Syndrome". I never saw that until recently when I took all my medical papers from home and made a personal file so I can show it wherever I go. I always wondered why my dermatologist from the university changed the diagnosis so suddenly and now I know why.

I was often hospitalized but she only saw me once or twice a day for a few minutes. She gave the instructions to her residents and after that off she went. I tried to ask her to give me some information, but I got nothing. It all resumed with pictures, students, vitamins plus creams with corticosteroids, but from my medical papers and what I was hearing from when they took me to the students, I was not satisfied. I believed it was more.

Then I went to college. I started to look more on the internet, but most of the time I could not find more than a few words on the disease. A year ago I found out that there was no cure for it. I thought my world was crashing. Why didn't someone tell me that? But I did not give up. My dermatologist sent me to a neurologist. She said she was the best. But from their conversation (between doctors, because shame on me, but I was spying on them), I heard that it is no longer their problem and that it's the neurologist's problem. So then came the big question…why?? I went along with them thinking that at some point I would find out some answers, right?

During this time I joined the The Parry Romberg Syndrome group that I mentioned above, and started to get more terrified when I read all those articles and about all the problems they had and got along the years. I thought the neurologist would help me but I only saw her last year in September when she recommended a CT and after that every time I try to contact her, that big army or nurses and doctors that work for her would not put me through to her. I tried until March this year and finally I gave up.

I went to see my dermatologist again and tried to explain to her. I told her that I believe that they want some extra money from me because the first time I went they did not call the doctor until I paid them. I had to send her my messages through her resident doctors. I guess she did not like my sincerity because her message was that I should call her at hospital because today she doesn't consult people any other way.

I was disappointed. I did not expect her to believe me or to treat me nice, but I was hoping for her advice or help, so I left and again I tried to take the matters in my hands. I started to research more on The Parry Romberg Syndrome on the internet and I thought that if I had all the right papers then someone will have to listen to me. But along with this crusade I am on, I have to go to college, work part time and watch over, if I may say so, for my younger sister that is in college in the same town with me.

These last two weeks were too much for me. My headaches that I have had since high school got worse. I started to forget things. I lost control of me. In my class, I fought with every colleague. They all hate me. They think I am going crazy. I asked the help of a psychologist at school but they asked me: "What for…in your condition?" Now, that's funny.

They sent me to a neuropsychiatry. I felt so good when I went to consult, but to my surprise, there were three doctors not one. I tried to explain to them my other problems with my memory, the headaches, that the flesh from my face hurts like it is ripped or burned, and the only thing that they kept asking was about those papers from the internet like I was trying to diagnose myself. I could not take their mocking too, so I lost it. I yelled at them! I told them that I am sick of fighting for my beliefs because doctors think that the pain is in my mind, just my imagination. At college, teachers don't ask me why my grades are bad day by day, but when I tell them I am sick they tell me that not everybody has to finish college so that makes me want to fight more even if I am losing my 'intelligence' so to speak. I explained to them that I am conscious of my disease and that there is nothing I can do at least at the moment because I don't have the resources, the time and the money and power to fight this bureaucracy that is everywhere. All I need is to live normal, to get rid of the pain and finish college because the only thing that will help me through the future is my diploma and not my looks. Finally, those three doctors thought that I should see another neurologist.

My parents don't believe me when I tell them that I can't keep up with school. They say I am lazy, and joke, they remember from high school that most of the lessons I "learned" I did it from class. I had no problems. I was smart, but now I have times when I need like a day to do simple stuff like a sum or an equation. I have had headaches since high school from tenth grade, even earlier but the CT I had back then and the one from last year in September showed no abnormalities and they all think that nothing is wrong with me.

I feel like someone has a very long needle and just shoves it in my head. I feel weak and tired when I walk up five stairs. My brain is about to explode like my heart beats in my head, and when I manage to get to the first floor I feel like I've run for miles. I have problems breathing and my mouth and lips are dry just from climbing up one floor. I sweat, especially on my forehead and under my eyes…but still if the tests are not bad, the doctors think there is nothing wrong.

I don't know if this is much to you but all I know is that it is not my imagination. The dermatologist says that from now on it belongs to the neurology and the neurologist says that is not a neurological problem. What can I do? I am so tired fighting.

In high school when I had those headaches after the CT and their conclusion was that I was doing it for attention, I could not take it anymore. The pain was too much for me. I tried three times to end my life back then. I guess I didn't do a very good job then, but I regret that I tried taking my life. I know that running from the problem will not make it disappear, but I don't want to go back there. I'm afraid that telling I've tried taking my life back then will cause them to put me somewhere and say that I'm crazy.

All the tests I have done since my disease are good except VSH that is high, but my CT is okay and so there is no pain, so THEY say. Am I crazy? It is really frustrating. I am in pain and there is nothing I can do about it. I took all that I could find on the internet about Parry Romberg Syndrome but they think I'm trying to tell them how to do their jobs. I don't know what they think, but they won't accept the information. I thought that if I could show them a doctor's point of view that has seen cases (more than one) then maybe they will consider those other problems.

I wrote to my minister of health twice but nothing, and to the European commission of health but they told me that I should address my problem to the government. I wrote to all the institutions in my country and to ONG's and still zero answers. I wrote to a TV station but nothing, no answer. I am shocked no one cares. The only thing I have are some articles I received from the minister of health in America, about neurological disorders something like that and that in just five days from the day I sent an email and over here no one cares. It's shocking!

Now I found a new neurologist. He was the first one to tell me about trigeminal neuralgia without me showing him the research! Who knows maybe I finally found My Doctor! It has been two days now since when I first talked to him and now I'll see what happens.

I am very disappointed. All the answers I should have receive from doctors, I got from the internet instead. No one believes most of my problems but that's just life. That's Romania!

Thank you for reading it and I hope no one has to go through this ordeal too…best wishes!!!

To Contact the Author

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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