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Chelsea Morgan Testimony

Sent: Thursday, January 13, 2005 2:25 PM
To: Dupree, Laforest
Subject: Chelsea Morgan testimony

Good morning and thank you for inviting me to speak to you today.

My name is Chelsea Morgan. I am 16 years old and I live with my family in Palm City, Fl.  I've come here today to tell you a little bit about my experiences with Chronic Fatigue Syndrome.

It's a disease that has turned my life into a nightmare.  And it has had an impact on every member of my family.  We have spent the last two and a half years trying to understand what has happened to me.

I experience horrible headaches and often feel a crushing tiredness.  My throat is sore and at times my muscles and joints ache.

But as sick as I've felt, one of the worst parts has been going to see doctors.  When they couldn't find an easy explanation for my illness they just became frustrated.  Some said, "Just push through it. Everyone gets tired.  What would you do if you really got sick?"

I know that right now there is another child going through exactly what I did.  They are sick, overwhelmed and afraid.  They need more than medical tests and lab work can provide.  They need a doctor that will admit they don't have all the answers and won't blame the patient for having a problem they don't yet know how to fix.  But mostly, they need doctors to believe them and tell them they are not alone.

I hope that by telling you what I've been going through, I can somehow make a difference in even one child's life.

It's been a long road to a diagnosis. Since childhood, I have had many ear and throat infections.  It seemed as soon as I got over one infection, I would get another.  The doctors told my family I was probably allergic to everything and would outgrow these continuous infections as I got older.

By the time I was 11, it looked like they were right.  I was feeling better, missing less days of school and really looking forward to starting middle school.

The next few years were the healthiest and happiest years of my life.  I met a lot of new friends and school was going great.

But when eighth grade started, I got very sick.  My pediatrician thought my symptoms were the result of a very bad sinus infection.  In the past, it had sometimes taken two or three rounds of antibiotics to knock out my infections.  But this time nothing was working.  I was living on antibiotics and steroids -- and I wasn't improving at all.

I was sent to an allergist who said my sickness was a result of untreated allergies.  I began weekly allergy shots and was told it could take years to get my symptoms under control.  My Mom purchased special bedding and changed the pillows and rugs in my room. She became a maniac with the vacuum cleaner in the hopes of curing me.  While I may have had the cleanest room in South Florida, I certainly didn't feel any better.

Next, I was sent to see three different ear, nose and throat doctors. None of them agreed on my treatment.

One wanted to put me on different antibiotics.  Another wanted to operate on my sinuses.  The third suggested that I didn't have a sinus infection at all and should be taken off all medication immediately.  He told us that whatever my problem was, it wasn't in his area.

My mom and I left that appointment and sat in the car dumbfounded.  What did that mean? If I didn't have a sinus infection, why was my head hurting all time?  Why was my throat so sore?  And why wasn't I getting any better?

Eighth grade was a blur to me.  I missed a tremendous amount of school.  My records say I was absent for 36 days.  What those records don't show are all the other times my Mom brought me to school late or picked me up early so I wouldn't be marked absent.  More than once I was so tired that I fell asleep in the car on the way home.

My parents met with my teachers and brought home my work.  I would try to study but found I could only work for short periods of time.  My headaches would get out of control if I concentrated for too long.  Some teachers understood and were unbelievably kind and helpful.  Others made it clear that they didn't believe I was sick and were unwilling to help me with the work I missed.
A horrible pattern was starting.  I would push myself to go to school, struggle through classes for a week or so and then be home sick in bed for the next week.  When I felt better, I would push myself to get caught up again only to have the pattern repeat itself.  I was becoming overwhelmed.

And on top of all that, my friends didn't understand why I wasn't coming to school.  Some thought I was just lazy.

But I had a bigger problem than my grades and my friends.  In the fall I would be entering high school.  My guidance counselor explained that no matter how high my grades, I would be held back if I continued to miss this much school.

During the summer before high school, we spent a lot of time and money traveling to see specialists in a frantic search to find out what was wrong with me.  It was around this time that I began to notice how bad my neurological problems had become.

Often, when someone spoke to me, I could hear the words but would have trouble understanding what they meant.  I began asking people to repeat themselves more slowly.   I know my family was really worried.  I could see it on their faces.  But when my Mom mentioned the problem to the doctors, they told her she was overreacting.  They said I was just a typical teenager.

I only wished I could be a typical teenager.

When nothing very significant was found during my immunological testing, it was decided that my health might be improved by a sinus operation.  It was scheduled for the Thanksgiving break of my Freshman year.

Unfortunately, it took less than two weeks of high school to put me back in bed.  The operation was moved up to the beginning of September. When it was done, we had the answer we already knew.  My problem wasn't my sinuses.

And now things were even worse. I couldn't get out of bed at all.

My pediatrician insisted this proved I had school-phobia.  She suggested I get counseling and be put into an alternative school in our district.  This was the school where they put students who had committed felonies or had been caught with drugs.

I knew I didn't belong there - and thank God my parents agreed with me.

During that doctor's visit, I'm still not sure who was angrier -- my pediatrician or my Mom.  In the end, my doctor decided she would no longer treat me for anything having to do with my chronic fatigue, but would refer me to any specialist I chose to see.

She reluctantly agreed to sign papers allowing me to stay out of school for two more weeks.  After that, I was to report for alternative education.

I was so upset that I wanted to give up.

But my family wouldn't hear of it.  The next week, my Mom found a well-known rheumatologist and talked him into seeing me.  As with the last 4 doctors I had seen, my Mom PROMISED me that if this appointment turned out badly, she would never make me go to another doctor again.

This turned out to be the worst appointment of them all.  This doctor said that I was trying to destroy my family by manipulating them.  His solution was antidepressants and a visit to a psychiatrist.

This time no one argued.  After we left the building, my Mom and I held each other as we cried.

I had no medical tests that showed I was sick.  And without proof, I was guilty until proven innocent.

I knew my family believed me, but it seemed like they were the only ones.

My Mom and I had asked the doctors about the possibility of me having chronic fatigue syndrome many times.  Each time, she was told I did not have it - and could not have it, because it wasn't even a "real" disease.

Even though my mom had promised no more doctors, she just couldn't give up on me.

She made one more try, by contacting local support groups for chronic fatigue syndrome.  They told her about a doctor who might be able to help.

This time was different.  This doctor understood my symptoms and explained I was not alone -- in my illness or in the path I had taken to get a diagnosis.

I am still learning what this disease will mean in my life.  I'm now a sophomore in high school.  With help from my new doctor, I've been able to stay out of the school for criminals.  Instead, we've set up an education plan that allows me to rest when I need to.

Of course, there are still teachers, doctors and friends who don't understand.  And to tell you the truth, there are plenty of times when I feel overwhelmed - even though I have people who love me and support me.

I don't know what my future holds.  I'd like to be a pediatrician someday or maybe a medical researcher.  On my good days I know I can do it.  However, on my bad days, I'm not sure I'll even make it through high school.  I know I will have to work harder than most if I am going to make a difference in this world.

But one way or another, I'm determined to find a way to overcome chronic fatigue syndrome - and when I do, I will find a way to help other children who are just like me.

Thank you for your time.