Re: Advocate~~ , KaLea's testimony

[Guest guest]

Wonderfully done! I know Ann Kunkel and her daughters. My son has had a crush

on them since 1998 when we met them. They are truley a wonderful family that

avocates on behalf of us all. I also have had the opportunity to advocate at a

local and national level. Whether here in KY or in DC on the hill this is a

wonderful opportunity and anyone interested should check out the Summits.

hugs and smiles!

Donna

[Guest guest]

Here you go, ...........

Testimony of KaLea Kunkel

A Young Adult With Scleroderma

Oregon, Missouri

Testimony Before the Health, Education, Labor, and Pensions Committee

United States Senate

June 8, 2004

Thank you Chairman Bond, Ranking Member Mikulski, and all of the members

of the subcommittee for hosting today's hearing and for giving me the

opportunity to testify on this important topic. My name is KaLea

Kunkel, and I am a 19-year-old sophomore at Washington

University. I grew up in Oregon, Missouri, a rural 900-person community

in northwest Missouri. I am speaking to this subcommittee today as one

of the 70 million Americans who live their life with the daily

challenges of arthritis and related diseases.

I was diagnosed with arthritis at age four. This makes me one of about

300,000 children diagnosed with childhood rheumatic disease in the

United States. I say " about, " because the federal government has not

undertaken a national prevalence study that tells us exactly how many

children in the United States are affected by the over 100 forms of

arthritis and related diseases. The legislation that we are discussing

today would authorize the Centers for Disease Control and Prevention to

undertake this important task.

My journey with arthritis began when my older sister, Kara, was

diagnosed with a form of juvenile rheumatoid arthritis (JRA) when she

was six years old. My brother, sister and I always had to accompany

Kara on visits to the pediatric rheumatologist, two hours away at the

University of Kansas Medical Center. This was the only hospital

remotely near us that had a pediatric rheumatologist.

Two years after Kara was diagnosed, I began to experience strange

changes in the color and temperature of my fingers and unusual changes

in my skin. Following a battery of tests, I was diagnosed with an

undifferentiated form of juvenile arthritis at the age of 4. However,

it was another 3 years before we knew the exact diagnosis was diffuse

scleroderma, a life-threatening autoimmune disease. Unlike JRA, which

predominately affects joints and eyes in children, scleroderma is a

disease of fibrosis or hardening of the skin and internal organs, and

for me, particularly the esophagus, intestinal tract, thyroid, and

lungs. It is very rare in children. Some people have this disease for

years before they get an accurate diagnosis, because like many other

forms of arthritis, scleroderma can be an invisible disease. The fact

that I was able to have aggressive treatment very early in my disease

has given me the opportunity for an improved prognosis.

I was fortunate that we had a pediatric rheumatologist nearby to treat

my scleroderma. Children in many other states like South Carolina,

Alabama, Wyoming, and New Hampshire are not so fortunate. They do not

have a pediatric rheumatologist in their state to provide them with the

care I received. This legislation before you today seeks to help these

families by establishing a limited loan repayment program for medical

students who decide to pursue a career in pediatric rheumatology. This

legislation also provides grants for those who conduct or promote the

coordination of research, training, and studies related to the

prevention of arthritis and other rheumatic diseases. Currently, less

than half of the children who need treatment are receiving it by a

pediatric rheumatologist. This program could mean the difference

between life and death for kids with juvenile arthritis and rheumatic

disease.

As I look back on my childhood, I cannot remember a time when I did not

deal with the daily battles of scleroderma. In the early stages of my

disease I had severe skin reactions and breathing difficulties when I

touched certain substances like soybeans. When our second grade class

carved pumpkins I had to wear rubber gloves to protect my skin, but I

still had a reaction. I had to leave class frequently to take pills and

breathing treatments, never failing to draw attention toward my disease.

At sleepovers with my friends, I had to stop to take a breathing

treatment for fifteen minutes while my friends stared at the machine

producing a fog from the medication that opened my airways and helped

alleviate my daily breathing complications. I spent my recess time

during the winter months watching my classmates play in the snow outside

while I sat in the classroom and colored pictures; I was unable to

explain why I could not join them outside, and I was always separated

from other kids my age. Adults were constantly reminding me to be

careful, and I was not able to understand the reasoning behind

everyone's fears. I just wanted to be a normal kid like my friends, but

every adult in my life seemed terrified for me to do anything.

During my early school years, my skin would become severely dry and

tight. It would cause cracks in the skin and bleeding. There were days

when I had blood dripping from my hands, legs, and feet. Every motion

shot pain throughout my body and my skin would burn. Nothing would

bring me any type of relief. My skin scarred because it split open so

frequently, and I found myself hiding my hands and legs from my friends.

I even found myself making up excuses about why my skin looked the way

it did and why it was so rough and dry. I was embarrassed to tell my

friends any details about my scleroderma. Even though I realized I had

scleroderma, the disease was just a name to me and the symptoms were

just a bad dream. I had always had health problems; they had simply

become a part of my daily life. Pain was normal for me and I became

immune to it. I got to a point long ago where I stopped wondering what

was normal because normal had never been a concept that I was familiar

with. I never understood what a normal pain level was or that my

scleroderma could handicap me or even kill me one day.

When I was in the sixth grade, I remember watching the movie " For Hope. "

This movie is about television actor Bob Saget's sister and her struggle

to cope with scleroderma. After the movie, I remember breaking down and

bawling, which is something I had never before allowed myself to do. I

cried until my mother came in and found me. She did not want me to

become alarmed, so she told me that the type of scleroderma that the

lady in the movie died of was not the kind I had. She said that my

organs were not going to scar and stop functioning. I was not going to

die like the woman in the movie did, in intense pain and unable to eat

or even breathe. That day, she lied to protect me from the truth. I

now know that I do have the same form of scleroderma. And I dread the

day that medications stop controlling and slowing the disease's

activity.

Following a serious flare-up of the disease in the sixth grade, I have

come to expect difficult times and increased internal damage from the

scleroderma. Nearly eight years ago marked the beginning of my trials

with severe acid reflux and a lack of intestinal mobility. Many days I

opted not to eat because the reflux was so severe it would aspirate into

my lungs. On top of this pain, I could barely breathe. My digestive

problems mounted during my junior year of high school. I found myself

in so much pain that I was gritting my teeth and taking chronic pain

medications multiple times a day just to make it through the daylight

hours. My joints began to hurt so much that I could hardly walk or

move. I was trying to play volleyball and cheer along with my friends,

but I could not move my hips or even go up a few stairs. I stopped

eating because my reflux was too painful and the fatigue was so severe

that soon I was doing nothing but sleeping, but the pain even made

sleeping impossible. Some days I had to leave school and return home

for a few hours to try to hide the pain from my teachers and classmates.

My treatment took five months, countless invasive tests, and three new

medical specialists to stabilize my disease. Before this flare-up, I

always tried to block out the pain, thinking it would pass, but now I

could no longer do that. My scleroderma was slowly fossilizing my body

by scarring my internal organs, and I could not fight the shots, CAT

scans, regular blood tests, and countless doctor appointments.

I began my freshman year at The Washington University last fall,

and I did well for the first two months of the semester. However, about

the middle of October my scleroderma flared up once again, and it hit me

in a whole new way. My chest pain became more intense than ever before

due to reflux, and I could not swallow or keep food down. My esophagus

was not pushing food down, my stomach was not breaking down what I ate,

and my intestines were not absorbing and moving food through my system

fast enough. Not only was my entire digestive system in constant

cramping pain, but my hips, knees, and shoulders became stiff and popped

with each movement. By the end of October, I could not stand without

getting dizzy and all I could do was sleep. It became hard for me to

keep any food in my stomach and soon blood was coming up with what I

ate, which was not surprising considering I threw up everything I ate.

I missed classes because I would get so dizzy that I almost blacked out

on several occasions. I felt helpless knowing that this flare would

send me back to another trial and error period at the doctor's office in

an attempt to stop the disease's activity. Hours in the doctor's office

are difficult, but as a young adult, hiding shots, countless

medications, and a disease that limits daily functions like holding on

to your college ID is far more painful.

Now nearly five months later, I take twenty-three pills a day and one

shot a week. I have five specialists, all of whom require regular

appointments and specialized tests to monitor my scleroderma at least

every three months. Blood and urine tests follow each appointment and

endoscopies with biopsies, lung function tests, and CAT scans remain

among my annual medical tests. I have come to expect at least one

flare-up a year, and each year I grow more nervous and worried as I

watch my disease change my body. As I look back over the last 19

years, I do not remember the physical pain; I remember the ways I have

tried to hide the pain and my disease from everyone, fighting the fact

that it exists. I think of the progression of my scleroderma and wonder

how long it will remain this stable. But despite all the complications

I deal with daily, I realize I am still one of the lucky ones because I

am still alive. I can still walk even when it is painful, and I am

still able to partially disguise my scleroderma while fighting what

before has always been an inevitable outcome. I have grown to

appreciate my doctors. If there is one thing I realize today it is how

lucky I am that my family has health insurance and is able to afford to

the hundreds of dollars each month for the medications needed to

stabilize my disease. I appreciate the fact that my parents saw the

necessity in finding a pediatric rheumatologist, and I know that we were

and still are among the few who have access to a pediatric

rheumatologist. I would not be alive today without the medical

attention of a pediatric rheumatologist and aggressive treatment.

Most people do not think of arthritis as a fatal disease. But the fact

remains that some forms of arthritis do result in death. My disease has

always been closely monitored and treated, but without pediatric

rheumatologists and funding for research, people like myself and those

who suffer from scleroderma and other forms of rheumatic disease, will

never be able to live a normal life.

I close thanking Senators Bond, and Kennedy for introducing the

Arthritis Prevention, Control, and Cure Act. This legislation provides

hope to me, and the thousands of kids living with this terrible disease.

It is the hope that all children will have access to the special care

they need and deserve.

It is the hope for a better understanding of what causes juvenile

arthritis.

It is the hope that we will someday find a cure.

Thank you.

[Guest guest]

Wow how inspiring she is , I was trully touched by this article....Thanks

Liz...........Terri

RE: Advocate~~ , KaLea's testimony

Here you go, ...........

Testimony of KaLea Kunkel

A Young Adult With Scleroderma

Oregon, Missouri

Testimony Before the Health, Education, Labor, and Pensions Committee

United States Senate

June 8, 2004

Thank you Chairman Bond, Ranking Member Mikulski, and all of the members

of the subcommittee for hosting today's hearing and for giving me the

opportunity to testify on this important topic. My name is KaLea

Kunkel, and I am a 19-year-old sophomore at Washington

University. I grew up in Oregon, Missouri, a rural 900-person community

in northwest Missouri. I am speaking to this subcommittee today as one

of the 70 million Americans who live their life with the daily

challenges of arthritis and related diseases.

I was diagnosed with arthritis at age four. This makes me one of about

300,000 children diagnosed with childhood rheumatic disease in the

United States. I say " about, " because the federal government has not

undertaken a national prevalence study that tells us exactly how many

children in the United States are affected by the over 100 forms of

arthritis and related diseases. The legislation that we are discussing

today would authorize the Centers for Disease Control and Prevention to

undertake this important task.

My journey with arthritis began when my older sister, Kara, was

diagnosed with a form of juvenile rheumatoid arthritis (JRA) when she

was six years old. My brother, sister and I always had to accompany

Kara on visits to the pediatric rheumatologist, two hours away at the

University of Kansas Medical Center. This was the only hospital

remotely near us that had a pediatric rheumatologist.

Two years after Kara was diagnosed, I began to experience strange

changes in the color and temperature of my fingers and unusual changes

in my skin. Following a battery of tests, I was diagnosed with an

undifferentiated form of juvenile arthritis at the age of 4. However,

it was another 3 years before we knew the exact diagnosis was diffuse

scleroderma, a life-threatening autoimmune disease. Unlike JRA, which

predominately affects joints and eyes in children, scleroderma is a

disease of fibrosis or hardening of the skin and internal organs, and

for me, particularly the esophagus, intestinal tract, thyroid, and

lungs. It is very rare in children. Some people have this disease for

years before they get an accurate diagnosis, because like many other

forms of arthritis, scleroderma can be an invisible disease. The fact

that I was able to have aggressive treatment very early in my disease

has given me the opportunity for an improved prognosis.

I was fortunate that we had a pediatric rheumatologist nearby to treat

my scleroderma. Children in many other states like South Carolina,

Alabama, Wyoming, and New Hampshire are not so fortunate. They do not

have a pediatric rheumatologist in their state to provide them with the

care I received. This legislation before you today seeks to help these

families by establishing a limited loan repayment program for medical

students who decide to pursue a career in pediatric rheumatology. This

legislation also provides grants for those who conduct or promote the

coordination of research, training, and studies related to the

prevention of arthritis and other rheumatic diseases. Currently, less

than half of the children who need treatment are receiving it by a

pediatric rheumatologist. This program could mean the difference

between life and death for kids with juvenile arthritis and rheumatic

disease.

As I look back on my childhood, I cannot remember a time when I did not

deal with the daily battles of scleroderma. In the early stages of my

disease I had severe skin reactions and breathing difficulties when I

touched certain substances like soybeans. When our second grade class

carved pumpkins I had to wear rubber gloves to protect my skin, but I

still had a reaction. I had to leave class frequently to take pills and

breathing treatments, never failing to draw attention toward my disease.

At sleepovers with my friends, I had to stop to take a breathing

treatment for fifteen minutes while my friends stared at the machine

producing a fog from the medication that opened my airways and helped

alleviate my daily breathing complications. I spent my recess time

during the winter months watching my classmates play in the snow outside

while I sat in the classroom and colored pictures; I was unable to

explain why I could not join them outside, and I was always separated

from other kids my age. Adults were constantly reminding me to be

careful, and I was not able to understand the reasoning behind

everyone's fears. I just wanted to be a normal kid like my friends, but

every adult in my life seemed terrified for me to do anything.

During my early school years, my skin would become severely dry and

tight. It would cause cracks in the skin and bleeding. There were days

when I had blood dripping from my hands, legs, and feet. Every motion

shot pain throughout my body and my skin would burn. Nothing would

bring me any type of relief. My skin scarred because it split open so

frequently, and I found myself hiding my hands and legs from my friends.

I even found myself making up excuses about why my skin looked the way

it did and why it was so rough and dry. I was embarrassed to tell my

friends any details about my scleroderma. Even though I realized I had

scleroderma, the disease was just a name to me and the symptoms were

just a bad dream. I had always had health problems; they had simply

become a part of my daily life. Pain was normal for me and I became

immune to it. I got to a point long ago where I stopped wondering what

was normal because normal had never been a concept that I was familiar

with. I never understood what a normal pain level was or that my

scleroderma could handicap me or even kill me one day.

When I was in the sixth grade, I remember watching the movie " For Hope. "

This movie is about television actor Bob Saget's sister and her struggle

to cope with scleroderma. After the movie, I remember breaking down and

bawling, which is something I had never before allowed myself to do. I

cried until my mother came in and found me. She did not want me to

become alarmed, so she told me that the type of scleroderma that the

lady in the movie died of was not the kind I had. She said that my

organs were not going to scar and stop functioning. I was not going to

die like the woman in the movie did, in intense pain and unable to eat

or even breathe. That day, she lied to protect me from the truth. I

now know that I do have the same form of scleroderma. And I dread the

day that medications stop controlling and slowing the disease's

activity.

Following a serious flare-up of the disease in the sixth grade, I have

come to expect difficult times and increased internal damage from the

scleroderma. Nearly eight years ago marked the beginning of my trials

with severe acid reflux and a lack of intestinal mobility. Many days I

opted not to eat because the reflux was so severe it would aspirate into

my lungs. On top of this pain, I could barely breathe. My digestive

problems mounted during my junior year of high school. I found myself

in so much pain that I was gritting my teeth and taking chronic pain

medications multiple times a day just to make it through the daylight

hours. My joints began to hurt so much that I could hardly walk or

move. I was trying to play volleyball and cheer along with my friends,

but I could not move my hips or even go up a few stairs. I stopped

eating because my reflux was too painful and the fatigue was so severe

that soon I was doing nothing but sleeping, but the pain even made

sleeping impossible. Some days I had to leave school and return home

for a few hours to try to hide the pain from my teachers and classmates.

My treatment took five months, countless invasive tests, and three new

medical specialists to stabilize my disease. Before this flare-up, I

always tried to block out the pain, thinking it would pass, but now I

could no longer do that. My scleroderma was slowly fossilizing my body

by scarring my internal organs, and I could not fight the shots, CAT

scans, regular blood tests, and countless doctor appointments.

I began my freshman year at The Washington University last fall,

and I did well for the first two months of the semester. However, about

the middle of October my scleroderma flared up once again, and it hit me

in a whole new way. My chest pain became more intense than ever before

due to reflux, and I could not swallow or keep food down. My esophagus

was not pushing food down, my stomach was not breaking down what I ate,

and my intestines were not absorbing and moving food through my system

fast enough. Not only was my entire digestive system in constant

cramping pain, but my hips, knees, and shoulders became stiff and popped

with each movement. By the end of October, I could not stand without

getting dizzy and all I could do was sleep. It became hard for me to

keep any food in my stomach and soon blood was coming up with what I

ate, which was not surprising considering I threw up everything I ate.

I missed classes because I would get so dizzy that I almost blacked out

on several occasions. I felt helpless knowing that this flare would

send me back to another trial and error period at the doctor's office in

an attempt to stop the disease's activity. Hours in the doctor's office

are difficult, but as a young adult, hiding shots, countless

medications, and a disease that limits daily functions like holding on

to your college ID is far more painful.

Now nearly five months later, I take twenty-three pills a day and one

shot a week. I have five specialists, all of whom require regular

appointments and specialized tests to monitor my scleroderma at least

every three months. Blood and urine tests follow each appointment and

endoscopies with biopsies, lung function tests, and CAT scans remain

among my annual medical tests. I have come to expect at least one

flare-up a year, and each year I grow more nervous and worried as I

watch my disease change my body. As I look back over the last 19

years, I do not remember the physical pain; I remember the ways I have

tried to hide the pain and my disease from everyone, fighting the fact

that it exists. I think of the progression of my scleroderma and wonder

how long it will remain this stable. But despite all the complications

I deal with daily, I realize I am still one of the lucky ones because I

am still alive. I can still walk even when it is painful, and I am

still able to partially disguise my scleroderma while fighting what

before has always been an inevitable outcome. I have grown to

appreciate my doctors. If there is one thing I realize today it is how

lucky I am that my family has health insurance and is able to afford to

the hundreds of dollars each month for the medications needed to

stabilize my disease. I appreciate the fact that my parents saw the

necessity in finding a pediatric rheumatologist, and I know that we were

and still are among the few who have access to a pediatric

rheumatologist. I would not be alive today without the medical

attention of a pediatric rheumatologist and aggressive treatment.

Most people do not think of arthritis as a fatal disease. But the fact

remains that some forms of arthritis do result in death. My disease has

always been closely monitored and treated, but without pediatric

rheumatologists and funding for research, people like myself and those

who suffer from scleroderma and other forms of rheumatic disease, will

never be able to live a normal life.

I close thanking Senators Bond, and Kennedy for introducing the

Arthritis Prevention, Control, and Cure Act. This legislation provides

hope to me, and the thousands of kids living with this terrible disease.

It is the hope that all children will have access to the special care

they need and deserve.

It is the hope for a better understanding of what causes juvenile

arthritis.

It is the hope that we will someday find a cure.

Thank you.