This week due to the incredible efforts of our Research Coordinator, Joe Voros we are shipping RE tissue from Brazil to UCLA. Last week we successfully shipped from Australia. In a week or so we will be posting a protocol manual regarding the specifics of how we transfer tissue for research purposes. We would like every neurologist and neurosurgeon in the world to receive the protocols. The availability of tissue drives research. For more on this please visit my facebook page where I recently posted two articles on rare disease research and patient recruitment. While it is wonderful that we are moving forward in our research efforts, this all requires funds. The cost of shipping the tissue from Brazil to the US is $2,500, all paid for by the RE Children’s Project. Please continue to donate so we may continue to build on our successes to date.
Thank you for sending me your e-mails. Although I do change the names I do publish many of them. It is important for our community to know we are not alone and that it is okay to discuss rasmussen’s for a greater good. Below is the e-mail of the week. Another case of a young person with “slowing burning” rasmussen’s. We are gradually connecting a growing group of teenagers and 20 somethings that are experiencing adult-onset RE. Supposedly very rare, I am beginning to wonder if there is a larger incidence of adult-onset RE, the slower progressing and less destructive form of RE. This e-mail comes from Australia.
I am 17 years old. I’ve been procrastinating, trying to get out of continuing the long and strenuous task of writing up Ancient History notes for an important upcoming exam, feeling slightly depressed about my diagnosis of RE 3 years ago. I decided to research it a bit, searching the net for a cure or some sort of nutritional tips when I stumbled upon your site. All the way over in Australia it feels good to know people care about such a dismal and rare disease. I absolutely love writing stories although I don’t do it much any more….When I was feeling somewhat dramatic and upset about RE a year or two ago I decided to write a small story and a second when the diagnosis became definite, I’ve attached it for you…
Fear of the Unknown
I don’t remember the first time it happened but I do remember what happened….
“What’s wrong with me?” I thought, furiously trying to hack my brain for medical terms or something that would help the symptoms I was having?
Once I was alone I went on my computer and typed in H-E-A-D-A-C-H-E-S.
It didn’t help.
So then I tried F-A-I-N-T-I-N-G. I wasn’t really fainting but I didn’t know what else to call it. I was having episodes as the doctors later called it.
It didn’t help.
So I kept it inside, at first I thought it was my diet and I tried changing what I ate.
It didn’t help.
Then I tried wearing a rubber band around my wrist and whenever I felt like it was about to happen, I snapped it.
It didn’t help, but it did hurt.
I ran out of ideas.
I was forever scared someone would find out or I wouldn’t be able to fix it myself, I thought I’d have to hide it forever. During sport I wouldn’t stop for fear of it happening again. Sometimes it would happen in class, no one noticed, I would say I was tired and put my head down and go to sleep. End of discussion.
Finally a whole month later it was getting worse and worse, one Friday night at dinner it happened in front of my whole family. I was scaring my sister, she thought I was doing it on purpose and I let her think that, but that night I told her. She then went and told my mum, that Sunday we went to the doctor, my auntie.
I didn’t even have to explain it to her because it happened right when I walked in and I fell into a chair that was coincidentally right next to me. My eyes rolled back, my head dropped and my whole left side went limp. I felt shaky and vulnerable, my secret was out…
I’m sure any doctors or nurses reading this would know immediately what I have but for the sake of my pride I’d rather not mention it.
My auntie knew immediately what was wrong, she told me I’d have to go to hospital and they’d test me. MRI’S, CAT scans, blood tests…. Even though she was trying to reassure me, tears were rolling down my cheeks, I was in shock, barely listening to a word she was saying.
Jumping into action she drove my mum and I to the children’s hospital. It happened, yet again, right in front of the nurses at the emergency ward. They eased me into a chair before I had time to fall. One of the nurses wheeled me to a bed, I saw all the other people, there were so many I felt so silly, I was probably healthier than all of them, yet I was rushed in first. I got the free bed.
At the time I didn’t complain, I wasn’t even thinking about anyone besides myself, but now….
We played 20 questions, my hands were bruised from all the drips and blood tests I was getting. They wheeled me into a ward where I stayed for the rest of the week. My mum slept in a chair beside my bed that night, she must’ve been so uncomfortable, I bet she didn’t sleep one bit. But she didn’t complain and she didn’t leave.
The next morning more tests were done, and again, we played 20 questions I was getting kind of tired of it.
I didn’t know what to tell my friends I didn’t want to alarm them but I had to tell them something. So I texted one of my friends, “I’m in hospital but don’t tell anyone yet.”
I went back to school on Monday the week after. I was met with hugs from all my friends. They asked me questions, and I was prepared for that, but most of the questions I either couldn’t or didn’t want to answer.
Everything started going downhill from there. they were angry with me, one of the girls in my class actually had the nerve to tell me off. “why wont you tell us?” she demanded, “we’ve been your friends since pre-school!”
But in the hospital that was exactly what I was thinking, surely they would understand right? I mean we’ve been friends since pre-school!” Obviously I was wrong.
I go to a very small school, there are only 12 girls in my class. I was friends with all of them but some I was closer to than others, and crazily enough the ones I was closer to didn’t understand me at all, and went behind my back, researching whatever I told them trying to work it out for themselves despite my telling them not to. All the other girls in my class, the ones I wasn’t so friendly with, understood me perfectly and respected my decision not to tell them.
I started a diary, I thought I was going to die. I even wrote down a will, my diary was full of unanswered questions. I talked about my friends and my feelings towards them. As well as my feeling about everything in general.
Almost every few days I’d go back to the hospital for more tests and questions. Bruises were forever on my hands and as soon as one went away I’d get another needle and it’d re-appear again the next day.
It’s been almost a year now and so far, so good. I’m still a little scared but hopefully one day we’ll have a proper diagnosis and all my questions will be answered.